/ en /news/count-me-launches-new-patient-partnered-research-project-translocation-renal-cell-carcinoma <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Tue, 11 Mar 2025 13:18:28 +0000 Corie Lok 5558201 at /news/gene-editing-extends-lifespan-mouse-model-prion-disease <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Tue, 14 Jan 2025 10:00:00 +0000 adicorat 5558086 at /news/clinical-genomicist-harnesses-team-based-science-help-rare-disease-patients <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Tue, 07 Jan 2025 14:00:00 +0000 adicorat 5557606 at /news/researchers-engineer-vivo-delivery-system-prime-editing-partially-restoring-vision-mice <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Mon, 08 Jan 2024 11:29:17 +0000 Corie Lok 5556226 at /news/approach-studies-how-rare-gene-variant-pairs-contribute-disease <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Thu, 07 Dec 2023 17:04:15 +0000 tulrich@broadinstitute.org 5556176 at /news/whyiscience-qa-computational-biologist-helps-build-datasets-genetic-disease-diagnosis <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Thu, 17 Aug 2023 13:27:18 +0000 Corie Lok 1282671 at /news/low-oxygen-levels-restore-balance-and-coordination-mouse-model-movement-disorder <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Wed, 21 Jun 2023 16:58:24 +0000 adicorat 1282381 at /news/blood-stem-cells-are-susceptible-ferroptosis-type-cell-death <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Thu, 16 Feb 2023 16:00:00 +0000 adicorat 1281686 at /news/gene-delivering-viruses-reach-brain-step-toward-gene-therapy-neurological-diseases <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Tue, 22 Nov 2022 23:54:31 +0000 aviveros@broadinstitute.org 1262191 at /news/broad-discovery-center-cambridge-opens-public-october <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Corie Lok</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" class="datetime">March 11, 2025</time> </span> <div class="hero-section container"> <div class="hero-section__row row"> <div class="hero-section__content hero-section__content_left col-6"> <div class="hero-section__breadcrumbs"> <div class="block block-system block-system-breadcrumb-block"> <nav class="breadcrumb" role="navigation" aria-labelledby="system-breadcrumb"> <h2 id="system-breadcrumb" class="visually-hidden">Breadcrumb</h2> <ol> <li> <a href="/">Home</a> </li> <li> <a href="/news">News</a> </li> </ol> </nav> </div> </div> <div class="hero-section__title"> <div class="block block-layout-builder block-field-blocknodelong-storytitle"> <span class="field field--name-title field--type-string field--label-hidden"><h1>Count Me In launches new patient-partnered research project for translocation renal cell carcinoma</h1> </span> </div> </div> <div class="hero-section__description"> <div class="block block-layout-builder block-field-blocknodelong-storybody"> <div class="clearfix text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><p>The effort will engage with patients, empowering them to share their unique health data with scientists to accelerate research.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Count Me In Communications </div> </div> <div class="hero-section__date"> <div class="block block-layout-builder block-field-blocknodelong-storycreated"> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-03-11T09:18:28-04:00" title="Tuesday, March 11, 2025 - 09:18" class="datetime">March 11, 2025</time> </span> </div> </div> </div> <div class="hero-section__right col-6"> <div class="hero-section__image"> <div class="block block-layout-builder block-field-blocknodelong-storyfield-image"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden field__item"> <article class="media media--type-image media--view-mode-multiple-content-types-header"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <picture> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1921px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop_xl/public/longstory/Count-Me-In_Launch_main_3.png?itok=cumk7P_7 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/png" width="754" height="503"> <source srcset="/files/styles/multiple_ct_header_desktop/public/longstory/Count-Me-In_Launch_main_3.png?itok=p51R8bYh 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/png" width="736" height="520"> <source srcset="/files/styles/multiple_ct_header_laptop/public/longstory/Count-Me-In_Launch_main_3.png?itok=SpucF3yb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/png" width="641" height="451"> <source srcset="/files/styles/multiple_ct_header_tablet/public/longstory/Count-Me-In_Launch_main_3.png?itok=Gu3H9Uap 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/png" width="706" height="417"> <source srcset="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT 1x" media="all and (max-width: 539px)" type="image/png" width="499" height="294"> <img loading="eager" width="499" height="294" src="/files/styles/multiple_ct_header_phone/public/longstory/Count-Me-In_Launch_main_3.png?itok=S-Ht3XDT" alt="Logo of Count Me In showing colorful dots connected by lines" title="Logo of Count Me In showing colorful dots connected by lines" typeof="foaf:Image"> </picture> </div> <div class="media-caption"> <div class="media-caption__description"> </div> </div> </article> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block block-better-social-sharing-buttons block-social-sharing-buttons-block"> <div style="display: none"><link rel="preload" href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg" as="image" type="image/svg+xml" crossorigin="anonymous"></div> <div class="social-sharing-buttons"> <a href="https://www.facebook.com/sharer/sharer.php?u=/taxonomy/term/619/feed&amp;title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button share-facebook" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#facebook" /> </svg> </a> <a href="https://twitter.com/intent/tweet?text=+/taxonomy/term/619/feed" target="_blank" title="Share to X" aria-label="Share to X" class="social-sharing-buttons-button share-x" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#x" /> </svg> </a> <a href="mailto:?subject=&amp;body=/taxonomy/term/619/feed" title="Share to Email" aria-label="Share to Email" class="social-sharing-buttons-button share-email" target="_blank" rel="noopener"> <svg aria-hidden="true" width="32px" height="32px" style="border-radius:100%;"> <use href="/modules/contrib/better_social_sharing_buttons/assets/dist/sprites/social-icons--no-color.svg#email" /> </svg> </a> </div> </div> <div class="block block-layout-builder block-field-blocknodelong-storyfield-content-paragraphs"> <div class="field field--name-field-content-paragraphs field--type-entity-reference-revisions field--label-hidden field__items"> <div class="field__item"> <div class="paragraph paragraph--type--text-narrow paragraph--view-mode--default"> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p><a href="https://joincountmein.org/" target="_blank">Count Me In</a>, a patient-partnered research initiative led by &nbsp;the ӳ����ý of MIT and Harvard and Dana-Farber Cancer Institute, is launching a new project focused on translocation renal cell carcinoma (tRCC), a rare and aggressive form of kidney cancer. The effort will engage with tRCC patients, empowering them to share their unique health data with scientists to accelerate research on tRCC.</p> <p>tRCC is a unique type of kidney cancer caused by specific genetic changes called translocations, where parts of chromosomes swap places or rearrange. While tRCC affects individuals across all age groups, it is most commonly diagnosed in children and young adults. Due to its rarity, research on tRCC has historically been limited, leaving patients and families with few therapeutic options and many unanswered questions.</p> <p>The <a href="http://tRCCProject.org" target="_blank">tRCC Project</a> aims to address these challenges, by partnering directly with patients, caregivers, and advocates to deepen understanding of this rare disease and generate new insights that could lead to new treatments.&nbsp;</p> <p>Participants can share their medical history, personal experiences, and biological samples through Count Me In’s secure online platform. To ensure participant privacy and security, all data will be de-identified before being shared with researchers. Leveraging its connection to the ӳ����ý, the study team will utilize cutting-edge genomic sequencing and advanced tools at the <a href="https://broadclinicallabs.org/">ӳ����ý Clinical Labs</a> to explore tRCC at a molecular level and drive meaningful discoveries.</p> <p>"Our mission is to redefine how rare cancers like tRCC are studied by offering all patients an opportunity to share their voice in the research process" said Diane Diehl, director of scientific operations for Count Me In. "By collaborating directly with the tRCC community, physicians and others in the scientific community, and applying Count Me In’s unique patient-partnered approach, we hope to uncover critical insights that pave the way for better treatments and improved care for those impacted by this difficult disease."</p> <p>"Translocation renal cell carcinoma (tRCC) is a rare and aggressive form of kidney cancer that poses significant treatment challenges,” said Srinivas Viswanathan, a physician at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School. “By partnering with Count Me In, we have a unique opportunity to engage directly with patients and families impacted by this under-researched cancer. This collaboration will deepen our understanding of the disease and help pave the way for new, more effective treatment options that could improve outcomes for those affected."</p> <p>"Count Me In’s patient-driven research model allows us to transform how we approach rare cancers like tRCC,” said Elizabeth Mullen, institute physician and program leader (renal) at Dana-Farber/Boston Children's Blood Disorders and Cancer Center, and an assistant professor of pediatrics at Harvard Medical School. “Increased access to diverse patient data, including genetic and clinical insights, is invaluable for the research community aiming to better understand this rare disease. Patient data helps us better understand tRCC biology, tailor treatments, and explore new therapies, bringing both scientific progress and renewed hope to those affected by this challenging cancer."&nbsp;</p> <p>The tRCC Project is open to anyone in the United States and Canada who has been diagnosed with tRCC. Patients or their caregivers can join the effort to advance research by visiting tRCCProject.org to learn more and enroll.<br> &nbsp;</p> </div> </div> </div> </div> </div> </div> </div> <div class="content-section container"> <div class="content-section__main"> <div class="block-node-broad-tags block block-layout-builder block-field-blocknodelong-storyfield-broad-tags"> <div class="block-node-broad-tags__row"> <div class="block-node-broad-tags__title">Tags:</div> <div class="field field--name-field-broad-tags field--type-entity-reference field--label-hidden field__items"> <div class="field__item"><a href="/broad-tags/count-me" hreflang="en">Count Me In</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> <div class="field__item"><a href="/broad-tags/rare-disease" hreflang="en">Rare Disease</a></div> </div> </div> </div> </div> </div> Mon, 19 Sep 2022 14:53:09 +0000 kzusi@broadinstitute.org 1195701 at