/ en Wed, 08 Oct 25 15:45:02 -0400 /news/pioneering-effort-patient-partnered-cancer-research-enters-new-phase <span class="field field--name-title field--type-string field--label-hidden"><h1>A pioneering effort in patient-partnered cancer research enters a new phase</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Leah Eisenstadt</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-10-08T15:45:02-04:00" class="datetime">October 8, 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>A pioneering effort in patient-partnered cancer research enters a new phase</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><em>Count Me In</em>’s legacy of data and resources will usher in a new way of doing research on other diseases and continue to fuel cancer studies around the globe.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Leah Eisenstadt </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="2025-10-08T15:45:02-04:00" title="Wednesday, October 8, 2025 - 15:45" class="datetime">October 8, 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=Kl6cwmHV 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/CMI%20story%20images_Main_800x596px.png?itok=7pnTSqtp 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/CMI%20story%20images_Main_800x596px.png?itok=9mdX6Dtv 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF" alt="Three headshot photos of patient participants in cancer research on a blue background." title="Three headshot photos of patient participants in cancer research on a blue background." typeof="foaf:Image" /> </picture> </div> <div class="media-caption"> <div class="media-caption__credit"> Credit: ӳ����ý Communications </div> <div class="media-caption__description"> Since the launch of Count Me In in 2015, thousands of people living with cancer, including (from left) JJ, Carrines, and Kyle, have enrolled in patient-partnered research studies to help advance discoveries that could one day lead to new treatments. </div> </div> 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</div> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p>In 2015, an innovative research initiative called <em>Count Me In</em> launched to give every patient with cancer, no matter where they lived, a way to contribute directly to research and help accelerate advances that could one day lead to new treatments.</p> <p>Since then, the collaboration between the ӳ����ý, the Dana-Farber Cancer Institute, and the Emerson Collective partnered with more than 12,000 people with cancer from across the U.S. and Canada. The participants shared their medical information, DNA samples, and their voices with cancer researchers. Dozens of cancer researchers have used that de-identified data to <a href="/node/1183751">make new discoveries</a> about the genetic roots of a wide range of cancer types, citing <em>Count Me In’s</em> own research papers hundreds of times.</p> <p>Now, the initiative is shifting focus to empower a new wave of discovery, by enabling more investigators to conduct patient-partnered research in cancer and other diseases including rare disease, and by ensuring that data, samples, and insights already generated will continue to help deepen the understanding of cancer.</p> <h2>A new beginning for patient-partnered research</h2> <p><em>Count Me In</em> first began as a single project focused on metastatic breast cancer, and the team soon launched more efforts aimed at other cancers and rare illnesses. Enrollment has now completed for the following projects: Angiosarcoma Project, Brain Tumor Project, Colorectal Cancer Project, Esophageal and Stomach Cancer Project, Metastatic Breast Cancer Project, Metastatic Breast Cancer Project in Spanish, and Metastatic Prostate Cancer Project.</p> <p>Patients can still enroll in projects focused on translocation renal cell carcinoma (<a href="http://trccproject.org" target="_blank">tRCC</a>) and pediatric hepatocellular carcinoma (<a href="http://pedihccproject.org" target="_blank">PediHCC</a>). In addition, enrollment for the <a href="http://osproject.org" target="_blank">osteosarcoma</a> and <a href="http://lmsproject.org" target="_blank">leiomyosarcoma</a> projects, which were funded through a National Cancer Institute grant modeled after <em>Count Me In’s</em> approach, will remain open until December 12, 2025.</p> <p><em>Count Me In</em> will now focus on releasing data into repositories readily accessible to researchers and ensuring that this valuable information continues to advance science. The team recently joined <a href="https://broadclinicallabs.org/" target="_blank">ӳ����ý Clinical Labs</a>, and together they will also work with researchers at the ӳ����ý and beyond who want to initiate patient-partnered studies in cancer and other illnesses.</p> <p>“We can utilize the lessons we’ve learned and the skills, infrastructure, and relationships that we've built over the years to further engage with other communities,” said Elana Anastasio, one of the first <em>Count Me In</em> project managers and now director of patient-partnered solutions for ӳ����ý Clinical Labs.</p> <p>“The merger of our teams represents a new beginning,” said Niall Lennon, chief scientific officer and chair of the board of ӳ����ý Clinical Labs and an institute scientist at the ӳ����ý. “We’ll continue to make the <em>Count Me In</em> datasets available, launch new projects built on the same principles, and apply the ӳ����ý’s cutting-edge technology to accelerate discoveries. Most importantly, we’ll honor what patients taught us: that they don’t just want to be subjects of research, they want to be partners in it.”</p> <p>The success of <em>Count Me In</em> efforts illustrates the benefits of connecting clinicians, advocacy groups, and patients, not only as study participants but as partners in developing study protocols and materials. Since 2015, more than 12,000 individuals living with cancer have enrolled, and more than 150 advocacy groups have been partners.</p> <p>Scientists analyzing <em>Count Me In</em> data have discovered why some cancers are harder to treat or more aggressive. Their work has revealed, for example, mutations that allow tumors to resist certain drugs and other mutations occurring more in tumors that have spread versus those that haven’t. Other research powered by <em>Count Me In</em> data has shed light on cancers that hadn’t been well studied, such as a <a href="/node/627096">study on angiosarcoma</a> that pointed to new ways to treat some patients with the rare cancer.</p> <p>In addition, <em>Count Me In</em> led a wave of patient-partnered studies over the past decade. “We’ve proven that patients are eager to contribute to research,” said Diane Diehl, former director of scientific operations with <em>Count Me In</em> and now head of internal business development for the ӳ����ý Genomics Platform. “And we’ve shown that we can do this and we can expand, especially in rare diseases where you won't have enough people in any one geographic location.”</p> <p>Team members recognize that this work is only possible with the generous contributions and partnerships of people living with cancer and their families. “It's so important to have tissue samples and other data from patients so the world can move forward toward a cure,” said Kyle Brewington, a patient participant in the Osteosarcoma Project.</p> <p>The team is also focused on engaging with new scientific collaborators to help them do more patient-partnered research. “We are hoping to take on new projects,” said Diehl. “If you're interested in doing this type of research, come talk to us.”</p> <p><em>Researchers interested in collaborating on patient-partnered research are invited to contact <a href="mailto:genomics@broadinstitute.org">genomics@broadinstitute.org</a> to learn more.</em></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/broad-clinical-labs" hreflang="en">ӳ����ý Clinical Labs</a></div> <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/genomics" hreflang="en">Genomics Platform</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> </div> </div> </div> </div> </div> Wed, 08 Oct 2025 19:45:02 +0000 leah@broadinstitute.org 5559451 at /news/whyiscience-qa-how-chemist-moved-business-side-science <span class="field field--name-title field--type-string field--label-hidden"><h1>A pioneering effort in patient-partnered cancer research enters a new phase</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Leah Eisenstadt</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-10-08T15:45:02-04:00" class="datetime">October 8, 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>A pioneering effort in patient-partnered cancer research enters a new phase</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><em>Count Me In</em>’s legacy of data and resources will usher in a new way of doing research on other diseases and continue to fuel cancer studies around the globe.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Leah Eisenstadt </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="2025-10-08T15:45:02-04:00" title="Wednesday, October 8, 2025 - 15:45" class="datetime">October 8, 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=Kl6cwmHV 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/CMI%20story%20images_Main_800x596px.png?itok=7pnTSqtp 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/CMI%20story%20images_Main_800x596px.png?itok=9mdX6Dtv 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF" alt="Three headshot photos of patient participants in cancer research on a blue background." title="Three headshot photos of patient participants in cancer research on a blue background." typeof="foaf:Image" /> </picture> </div> <div class="media-caption"> <div class="media-caption__credit"> Credit: ӳ����ý Communications </div> <div class="media-caption__description"> Since the launch of Count Me In in 2015, thousands of people living with cancer, including (from left) JJ, Carrines, and Kyle, have enrolled in patient-partnered research studies to help advance discoveries that could one day lead to new treatments. </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 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type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=xLZr6NXN 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=OuGXEETZ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq" alt="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" title="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">Patient-partnered research finds clues about a rare cancer’s genetic roots</span> </a> </div> </article> </div> <div class="field__item"><article about="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research"><picture> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=a2edP8PD 1x" media="all and (min-width: 1921px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=a2edP8PD 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=o_CAidUb 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=o_CAidUb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=WaWo41t_ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ" alt="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" title="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">A musician joins other patients with rare cancer to ignite research</span> </a> </div> </article> </div> </div> </div> </div> </div> </div> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p>In 2015, an innovative research initiative called <em>Count Me In</em> launched to give every patient with cancer, no matter where they lived, a way to contribute directly to research and help accelerate advances that could one day lead to new treatments.</p> <p>Since then, the collaboration between the ӳ����ý, the Dana-Farber Cancer Institute, and the Emerson Collective partnered with more than 12,000 people with cancer from across the U.S. and Canada. The participants shared their medical information, DNA samples, and their voices with cancer researchers. Dozens of cancer researchers have used that de-identified data to <a href="/node/1183751">make new discoveries</a> about the genetic roots of a wide range of cancer types, citing <em>Count Me In’s</em> own research papers hundreds of times.</p> <p>Now, the initiative is shifting focus to empower a new wave of discovery, by enabling more investigators to conduct patient-partnered research in cancer and other diseases including rare disease, and by ensuring that data, samples, and insights already generated will continue to help deepen the understanding of cancer.</p> <h2>A new beginning for patient-partnered research</h2> <p><em>Count Me In</em> first began as a single project focused on metastatic breast cancer, and the team soon launched more efforts aimed at other cancers and rare illnesses. Enrollment has now completed for the following projects: Angiosarcoma Project, Brain Tumor Project, Colorectal Cancer Project, Esophageal and Stomach Cancer Project, Metastatic Breast Cancer Project, Metastatic Breast Cancer Project in Spanish, and Metastatic Prostate Cancer Project.</p> <p>Patients can still enroll in projects focused on translocation renal cell carcinoma (<a href="http://trccproject.org" target="_blank">tRCC</a>) and pediatric hepatocellular carcinoma (<a href="http://pedihccproject.org" target="_blank">PediHCC</a>). In addition, enrollment for the <a href="http://osproject.org" target="_blank">osteosarcoma</a> and <a href="http://lmsproject.org" target="_blank">leiomyosarcoma</a> projects, which were funded through a National Cancer Institute grant modeled after <em>Count Me In’s</em> approach, will remain open until December 12, 2025.</p> <p><em>Count Me In</em> will now focus on releasing data into repositories readily accessible to researchers and ensuring that this valuable information continues to advance science. The team recently joined <a href="https://broadclinicallabs.org/" target="_blank">ӳ����ý Clinical Labs</a>, and together they will also work with researchers at the ӳ����ý and beyond who want to initiate patient-partnered studies in cancer and other illnesses.</p> <p>“We can utilize the lessons we’ve learned and the skills, infrastructure, and relationships that we've built over the years to further engage with other communities,” said Elana Anastasio, one of the first <em>Count Me In</em> project managers and now director of patient-partnered solutions for ӳ����ý Clinical Labs.</p> <p>“The merger of our teams represents a new beginning,” said Niall Lennon, chief scientific officer and chair of the board of ӳ����ý Clinical Labs and an institute scientist at the ӳ����ý. “We’ll continue to make the <em>Count Me In</em> datasets available, launch new projects built on the same principles, and apply the ӳ����ý’s cutting-edge technology to accelerate discoveries. Most importantly, we’ll honor what patients taught us: that they don’t just want to be subjects of research, they want to be partners in it.”</p> <p>The success of <em>Count Me In</em> efforts illustrates the benefits of connecting clinicians, advocacy groups, and patients, not only as study participants but as partners in developing study protocols and materials. Since 2015, more than 12,000 individuals living with cancer have enrolled, and more than 150 advocacy groups have been partners.</p> <p>Scientists analyzing <em>Count Me In</em> data have discovered why some cancers are harder to treat or more aggressive. Their work has revealed, for example, mutations that allow tumors to resist certain drugs and other mutations occurring more in tumors that have spread versus those that haven’t. Other research powered by <em>Count Me In</em> data has shed light on cancers that hadn’t been well studied, such as a <a href="/node/627096">study on angiosarcoma</a> that pointed to new ways to treat some patients with the rare cancer.</p> <p>In addition, <em>Count Me In</em> led a wave of patient-partnered studies over the past decade. “We’ve proven that patients are eager to contribute to research,” said Diane Diehl, former director of scientific operations with <em>Count Me In</em> and now head of internal business development for the ӳ����ý Genomics Platform. “And we’ve shown that we can do this and we can expand, especially in rare diseases where you won't have enough people in any one geographic location.”</p> <p>Team members recognize that this work is only possible with the generous contributions and partnerships of people living with cancer and their families. “It's so important to have tissue samples and other data from patients so the world can move forward toward a cure,” said Kyle Brewington, a patient participant in the Osteosarcoma Project.</p> <p>The team is also focused on engaging with new scientific collaborators to help them do more patient-partnered research. “We are hoping to take on new projects,” said Diehl. “If you're interested in doing this type of research, come talk to us.”</p> <p><em>Researchers interested in collaborating on patient-partnered research are invited to contact <a href="mailto:genomics@broadinstitute.org">genomics@broadinstitute.org</a> to learn more.</em></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/broad-clinical-labs" hreflang="en">ӳ����ý Clinical Labs</a></div> <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/genomics" hreflang="en">Genomics Platform</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> </div> </div> </div> </div> </div> Wed, 16 Apr 2025 15:01:58 +0000 Corie Lok 5558476 at /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>A pioneering effort in patient-partnered cancer research enters a new phase</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Leah Eisenstadt</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-10-08T15:45:02-04:00" class="datetime">October 8, 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>A pioneering effort in patient-partnered cancer research enters a new phase</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><em>Count Me In</em>’s legacy of data and resources will usher in a new way of doing research on other diseases and continue to fuel cancer studies around the globe.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Leah Eisenstadt </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="2025-10-08T15:45:02-04:00" title="Wednesday, October 8, 2025 - 15:45" class="datetime">October 8, 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=Kl6cwmHV 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/CMI%20story%20images_Main_800x596px.png?itok=7pnTSqtp 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/CMI%20story%20images_Main_800x596px.png?itok=9mdX6Dtv 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF" alt="Three headshot photos of patient participants in cancer research on a blue background." title="Three headshot photos of patient participants in cancer research on a blue background." typeof="foaf:Image" /> </picture> </div> <div class="media-caption"> <div class="media-caption__credit"> Credit: ӳ����ý Communications </div> <div class="media-caption__description"> Since the launch of Count Me In in 2015, thousands of people living with cancer, including (from left) JJ, Carrines, and Kyle, have enrolled in patient-partnered research studies to help advance discoveries that could one day lead to new treatments. </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 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539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=_dlBinRq" alt="Patient participants in Count Me In" title="Patient participants in Count Me In" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/how-patient-partnership-propelling-cancer-research" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">How a patient partnership is propelling cancer research</span> </a> </div> </article> </div> <div class="field__item"><article about="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <a href="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots"><picture> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=O6TIoX3o 1x" media="all and (min-width: 1921px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=O6TIoX3o 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=xLZr6NXN 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=xLZr6NXN 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=OuGXEETZ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq" alt="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" title="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">Patient-partnered research finds clues about a rare cancer’s genetic roots</span> </a> </div> </article> </div> <div class="field__item"><article about="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research"><picture> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=a2edP8PD 1x" media="all and (min-width: 1921px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=a2edP8PD 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=o_CAidUb 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=o_CAidUb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=WaWo41t_ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ" alt="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" title="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">A musician joins other patients with rare cancer to ignite research</span> </a> </div> </article> </div> </div> </div> </div> </div> </div> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p>In 2015, an innovative research initiative called <em>Count Me In</em> launched to give every patient with cancer, no matter where they lived, a way to contribute directly to research and help accelerate advances that could one day lead to new treatments.</p> <p>Since then, the collaboration between the ӳ����ý, the Dana-Farber Cancer Institute, and the Emerson Collective partnered with more than 12,000 people with cancer from across the U.S. and Canada. The participants shared their medical information, DNA samples, and their voices with cancer researchers. Dozens of cancer researchers have used that de-identified data to <a href="/node/1183751">make new discoveries</a> about the genetic roots of a wide range of cancer types, citing <em>Count Me In’s</em> own research papers hundreds of times.</p> <p>Now, the initiative is shifting focus to empower a new wave of discovery, by enabling more investigators to conduct patient-partnered research in cancer and other diseases including rare disease, and by ensuring that data, samples, and insights already generated will continue to help deepen the understanding of cancer.</p> <h2>A new beginning for patient-partnered research</h2> <p><em>Count Me In</em> first began as a single project focused on metastatic breast cancer, and the team soon launched more efforts aimed at other cancers and rare illnesses. Enrollment has now completed for the following projects: Angiosarcoma Project, Brain Tumor Project, Colorectal Cancer Project, Esophageal and Stomach Cancer Project, Metastatic Breast Cancer Project, Metastatic Breast Cancer Project in Spanish, and Metastatic Prostate Cancer Project.</p> <p>Patients can still enroll in projects focused on translocation renal cell carcinoma (<a href="http://trccproject.org" target="_blank">tRCC</a>) and pediatric hepatocellular carcinoma (<a href="http://pedihccproject.org" target="_blank">PediHCC</a>). In addition, enrollment for the <a href="http://osproject.org" target="_blank">osteosarcoma</a> and <a href="http://lmsproject.org" target="_blank">leiomyosarcoma</a> projects, which were funded through a National Cancer Institute grant modeled after <em>Count Me In’s</em> approach, will remain open until December 12, 2025.</p> <p><em>Count Me In</em> will now focus on releasing data into repositories readily accessible to researchers and ensuring that this valuable information continues to advance science. The team recently joined <a href="https://broadclinicallabs.org/" target="_blank">ӳ����ý Clinical Labs</a>, and together they will also work with researchers at the ӳ����ý and beyond who want to initiate patient-partnered studies in cancer and other illnesses.</p> <p>“We can utilize the lessons we’ve learned and the skills, infrastructure, and relationships that we've built over the years to further engage with other communities,” said Elana Anastasio, one of the first <em>Count Me In</em> project managers and now director of patient-partnered solutions for ӳ����ý Clinical Labs.</p> <p>“The merger of our teams represents a new beginning,” said Niall Lennon, chief scientific officer and chair of the board of ӳ����ý Clinical Labs and an institute scientist at the ӳ����ý. “We’ll continue to make the <em>Count Me In</em> datasets available, launch new projects built on the same principles, and apply the ӳ����ý’s cutting-edge technology to accelerate discoveries. Most importantly, we’ll honor what patients taught us: that they don’t just want to be subjects of research, they want to be partners in it.”</p> <p>The success of <em>Count Me In</em> efforts illustrates the benefits of connecting clinicians, advocacy groups, and patients, not only as study participants but as partners in developing study protocols and materials. Since 2015, more than 12,000 individuals living with cancer have enrolled, and more than 150 advocacy groups have been partners.</p> <p>Scientists analyzing <em>Count Me In</em> data have discovered why some cancers are harder to treat or more aggressive. Their work has revealed, for example, mutations that allow tumors to resist certain drugs and other mutations occurring more in tumors that have spread versus those that haven’t. Other research powered by <em>Count Me In</em> data has shed light on cancers that hadn’t been well studied, such as a <a href="/node/627096">study on angiosarcoma</a> that pointed to new ways to treat some patients with the rare cancer.</p> <p>In addition, <em>Count Me In</em> led a wave of patient-partnered studies over the past decade. “We’ve proven that patients are eager to contribute to research,” said Diane Diehl, former director of scientific operations with <em>Count Me In</em> and now head of internal business development for the ӳ����ý Genomics Platform. “And we’ve shown that we can do this and we can expand, especially in rare diseases where you won't have enough people in any one geographic location.”</p> <p>Team members recognize that this work is only possible with the generous contributions and partnerships of people living with cancer and their families. “It's so important to have tissue samples and other data from patients so the world can move forward toward a cure,” said Kyle Brewington, a patient participant in the Osteosarcoma Project.</p> <p>The team is also focused on engaging with new scientific collaborators to help them do more patient-partnered research. “We are hoping to take on new projects,” said Diehl. “If you're interested in doing this type of research, come talk to us.”</p> <p><em>Researchers interested in collaborating on patient-partnered research are invited to contact <a href="mailto:genomics@broadinstitute.org">genomics@broadinstitute.org</a> to learn more.</em></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/broad-clinical-labs" hreflang="en">ӳ����ý Clinical Labs</a></div> <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/genomics" hreflang="en">Genomics Platform</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> </div> </div> </div> </div> </div> Tue, 11 Mar 2025 13:18:28 +0000 Corie Lok 5558201 at /news/count-me-launches-osteosarcoma-project-spanishcount-me-lanza-el-proyecto-osteosarcoma-en <span class="field field--name-title field--type-string field--label-hidden"><h1>A pioneering effort in patient-partnered cancer research enters a new phase</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Leah Eisenstadt</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-10-08T15:45:02-04:00" class="datetime">October 8, 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>A pioneering effort in patient-partnered cancer research enters a new phase</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><em>Count Me In</em>’s legacy of data and resources will usher in a new way of doing research on other diseases and continue to fuel cancer studies around the globe.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Leah Eisenstadt </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="2025-10-08T15:45:02-04:00" title="Wednesday, October 8, 2025 - 15:45" class="datetime">October 8, 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=Kl6cwmHV 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/CMI%20story%20images_Main_800x596px.png?itok=7pnTSqtp 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/CMI%20story%20images_Main_800x596px.png?itok=9mdX6Dtv 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF" alt="Three headshot photos of patient participants in cancer research on a blue background." title="Three headshot photos of patient participants in cancer research on a blue background." typeof="foaf:Image" /> </picture> </div> <div class="media-caption"> <div class="media-caption__credit"> Credit: ӳ����ý Communications </div> <div class="media-caption__description"> Since the launch of Count Me In in 2015, thousands of people living with cancer, including (from left) JJ, Carrines, and Kyle, have enrolled in patient-partnered research studies to help advance discoveries that could one day lead to new treatments. </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 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type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=xLZr6NXN 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=OuGXEETZ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq" alt="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" title="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">Patient-partnered research finds clues about a rare cancer’s genetic roots</span> </a> </div> </article> </div> <div class="field__item"><article about="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden 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media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=WaWo41t_ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ" alt="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" title="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">A musician joins other patients with rare cancer to ignite research</span> </a> </div> </article> </div> </div> </div> </div> </div> </div> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p>In 2015, an innovative research initiative called <em>Count Me In</em> launched to give every patient with cancer, no matter where they lived, a way to contribute directly to research and help accelerate advances that could one day lead to new treatments.</p> <p>Since then, the collaboration between the ӳ����ý, the Dana-Farber Cancer Institute, and the Emerson Collective partnered with more than 12,000 people with cancer from across the U.S. and Canada. The participants shared their medical information, DNA samples, and their voices with cancer researchers. Dozens of cancer researchers have used that de-identified data to <a href="/node/1183751">make new discoveries</a> about the genetic roots of a wide range of cancer types, citing <em>Count Me In’s</em> own research papers hundreds of times.</p> <p>Now, the initiative is shifting focus to empower a new wave of discovery, by enabling more investigators to conduct patient-partnered research in cancer and other diseases including rare disease, and by ensuring that data, samples, and insights already generated will continue to help deepen the understanding of cancer.</p> <h2>A new beginning for patient-partnered research</h2> <p><em>Count Me In</em> first began as a single project focused on metastatic breast cancer, and the team soon launched more efforts aimed at other cancers and rare illnesses. Enrollment has now completed for the following projects: Angiosarcoma Project, Brain Tumor Project, Colorectal Cancer Project, Esophageal and Stomach Cancer Project, Metastatic Breast Cancer Project, Metastatic Breast Cancer Project in Spanish, and Metastatic Prostate Cancer Project.</p> <p>Patients can still enroll in projects focused on translocation renal cell carcinoma (<a href="http://trccproject.org" target="_blank">tRCC</a>) and pediatric hepatocellular carcinoma (<a href="http://pedihccproject.org" target="_blank">PediHCC</a>). In addition, enrollment for the <a href="http://osproject.org" target="_blank">osteosarcoma</a> and <a href="http://lmsproject.org" target="_blank">leiomyosarcoma</a> projects, which were funded through a National Cancer Institute grant modeled after <em>Count Me In’s</em> approach, will remain open until December 12, 2025.</p> <p><em>Count Me In</em> will now focus on releasing data into repositories readily accessible to researchers and ensuring that this valuable information continues to advance science. The team recently joined <a href="https://broadclinicallabs.org/" target="_blank">ӳ����ý Clinical Labs</a>, and together they will also work with researchers at the ӳ����ý and beyond who want to initiate patient-partnered studies in cancer and other illnesses.</p> <p>“We can utilize the lessons we’ve learned and the skills, infrastructure, and relationships that we've built over the years to further engage with other communities,” said Elana Anastasio, one of the first <em>Count Me In</em> project managers and now director of patient-partnered solutions for ӳ����ý Clinical Labs.</p> <p>“The merger of our teams represents a new beginning,” said Niall Lennon, chief scientific officer and chair of the board of ӳ����ý Clinical Labs and an institute scientist at the ӳ����ý. “We’ll continue to make the <em>Count Me In</em> datasets available, launch new projects built on the same principles, and apply the ӳ����ý’s cutting-edge technology to accelerate discoveries. Most importantly, we’ll honor what patients taught us: that they don’t just want to be subjects of research, they want to be partners in it.”</p> <p>The success of <em>Count Me In</em> efforts illustrates the benefits of connecting clinicians, advocacy groups, and patients, not only as study participants but as partners in developing study protocols and materials. Since 2015, more than 12,000 individuals living with cancer have enrolled, and more than 150 advocacy groups have been partners.</p> <p>Scientists analyzing <em>Count Me In</em> data have discovered why some cancers are harder to treat or more aggressive. Their work has revealed, for example, mutations that allow tumors to resist certain drugs and other mutations occurring more in tumors that have spread versus those that haven’t. Other research powered by <em>Count Me In</em> data has shed light on cancers that hadn’t been well studied, such as a <a href="/node/627096">study on angiosarcoma</a> that pointed to new ways to treat some patients with the rare cancer.</p> <p>In addition, <em>Count Me In</em> led a wave of patient-partnered studies over the past decade. “We’ve proven that patients are eager to contribute to research,” said Diane Diehl, former director of scientific operations with <em>Count Me In</em> and now head of internal business development for the ӳ����ý Genomics Platform. “And we’ve shown that we can do this and we can expand, especially in rare diseases where you won't have enough people in any one geographic location.”</p> <p>Team members recognize that this work is only possible with the generous contributions and partnerships of people living with cancer and their families. “It's so important to have tissue samples and other data from patients so the world can move forward toward a cure,” said Kyle Brewington, a patient participant in the Osteosarcoma Project.</p> <p>The team is also focused on engaging with new scientific collaborators to help them do more patient-partnered research. “We are hoping to take on new projects,” said Diehl. “If you're interested in doing this type of research, come talk to us.”</p> <p><em>Researchers interested in collaborating on patient-partnered research are invited to contact <a href="mailto:genomics@broadinstitute.org">genomics@broadinstitute.org</a> to learn more.</em></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/broad-clinical-labs" hreflang="en">ӳ����ý Clinical Labs</a></div> <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/genomics" hreflang="en">Genomics Platform</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> </div> </div> </div> </div> </div> Wed, 21 Feb 2024 13:48:11 +0000 Corie Lok 5556456 at /news/count-me-patient-partnered-research-launches-new-project-pediatric-hepatocellular-carcinoma <span class="field field--name-title field--type-string field--label-hidden"><h1>A pioneering effort in patient-partnered cancer research enters a new phase</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Leah Eisenstadt</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-10-08T15:45:02-04:00" class="datetime">October 8, 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>A pioneering effort in patient-partnered cancer research enters a new phase</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><em>Count Me In</em>’s legacy of data and resources will usher in a new way of doing research on other diseases and continue to fuel cancer studies around the globe.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Leah Eisenstadt </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="2025-10-08T15:45:02-04:00" title="Wednesday, October 8, 2025 - 15:45" class="datetime">October 8, 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=Kl6cwmHV 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/CMI%20story%20images_Main_800x596px.png?itok=7pnTSqtp 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/CMI%20story%20images_Main_800x596px.png?itok=9mdX6Dtv 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF" alt="Three headshot photos of patient participants in cancer research on a blue background." title="Three headshot photos of patient participants in cancer research on a blue background." typeof="foaf:Image" /> </picture> </div> <div class="media-caption"> <div class="media-caption__credit"> Credit: ӳ����ý Communications </div> <div class="media-caption__description"> Since the launch of Count Me In in 2015, thousands of people living with cancer, including (from left) JJ, Carrines, and Kyle, have enrolled in patient-partnered research studies to help advance discoveries that could one day lead to new treatments. </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 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alt="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" title="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">Patient-partnered research finds clues about a rare cancer’s genetic roots</span> </a> </div> </article> </div> <div class="field__item"><article about="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden 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media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=WaWo41t_ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ" alt="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" title="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">A musician joins other patients with rare cancer to ignite research</span> </a> </div> </article> </div> </div> </div> </div> </div> </div> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p>In 2015, an innovative research initiative called <em>Count Me In</em> launched to give every patient with cancer, no matter where they lived, a way to contribute directly to research and help accelerate advances that could one day lead to new treatments.</p> <p>Since then, the collaboration between the ӳ����ý, the Dana-Farber Cancer Institute, and the Emerson Collective partnered with more than 12,000 people with cancer from across the U.S. and Canada. The participants shared their medical information, DNA samples, and their voices with cancer researchers. Dozens of cancer researchers have used that de-identified data to <a href="/node/1183751">make new discoveries</a> about the genetic roots of a wide range of cancer types, citing <em>Count Me In’s</em> own research papers hundreds of times.</p> <p>Now, the initiative is shifting focus to empower a new wave of discovery, by enabling more investigators to conduct patient-partnered research in cancer and other diseases including rare disease, and by ensuring that data, samples, and insights already generated will continue to help deepen the understanding of cancer.</p> <h2>A new beginning for patient-partnered research</h2> <p><em>Count Me In</em> first began as a single project focused on metastatic breast cancer, and the team soon launched more efforts aimed at other cancers and rare illnesses. Enrollment has now completed for the following projects: Angiosarcoma Project, Brain Tumor Project, Colorectal Cancer Project, Esophageal and Stomach Cancer Project, Metastatic Breast Cancer Project, Metastatic Breast Cancer Project in Spanish, and Metastatic Prostate Cancer Project.</p> <p>Patients can still enroll in projects focused on translocation renal cell carcinoma (<a href="http://trccproject.org" target="_blank">tRCC</a>) and pediatric hepatocellular carcinoma (<a href="http://pedihccproject.org" target="_blank">PediHCC</a>). In addition, enrollment for the <a href="http://osproject.org" target="_blank">osteosarcoma</a> and <a href="http://lmsproject.org" target="_blank">leiomyosarcoma</a> projects, which were funded through a National Cancer Institute grant modeled after <em>Count Me In’s</em> approach, will remain open until December 12, 2025.</p> <p><em>Count Me In</em> will now focus on releasing data into repositories readily accessible to researchers and ensuring that this valuable information continues to advance science. The team recently joined <a href="https://broadclinicallabs.org/" target="_blank">ӳ����ý Clinical Labs</a>, and together they will also work with researchers at the ӳ����ý and beyond who want to initiate patient-partnered studies in cancer and other illnesses.</p> <p>“We can utilize the lessons we’ve learned and the skills, infrastructure, and relationships that we've built over the years to further engage with other communities,” said Elana Anastasio, one of the first <em>Count Me In</em> project managers and now director of patient-partnered solutions for ӳ����ý Clinical Labs.</p> <p>“The merger of our teams represents a new beginning,” said Niall Lennon, chief scientific officer and chair of the board of ӳ����ý Clinical Labs and an institute scientist at the ӳ����ý. “We’ll continue to make the <em>Count Me In</em> datasets available, launch new projects built on the same principles, and apply the ӳ����ý’s cutting-edge technology to accelerate discoveries. Most importantly, we’ll honor what patients taught us: that they don’t just want to be subjects of research, they want to be partners in it.”</p> <p>The success of <em>Count Me In</em> efforts illustrates the benefits of connecting clinicians, advocacy groups, and patients, not only as study participants but as partners in developing study protocols and materials. Since 2015, more than 12,000 individuals living with cancer have enrolled, and more than 150 advocacy groups have been partners.</p> <p>Scientists analyzing <em>Count Me In</em> data have discovered why some cancers are harder to treat or more aggressive. Their work has revealed, for example, mutations that allow tumors to resist certain drugs and other mutations occurring more in tumors that have spread versus those that haven’t. Other research powered by <em>Count Me In</em> data has shed light on cancers that hadn’t been well studied, such as a <a href="/node/627096">study on angiosarcoma</a> that pointed to new ways to treat some patients with the rare cancer.</p> <p>In addition, <em>Count Me In</em> led a wave of patient-partnered studies over the past decade. “We’ve proven that patients are eager to contribute to research,” said Diane Diehl, former director of scientific operations with <em>Count Me In</em> and now head of internal business development for the ӳ����ý Genomics Platform. “And we’ve shown that we can do this and we can expand, especially in rare diseases where you won't have enough people in any one geographic location.”</p> <p>Team members recognize that this work is only possible with the generous contributions and partnerships of people living with cancer and their families. “It's so important to have tissue samples and other data from patients so the world can move forward toward a cure,” said Kyle Brewington, a patient participant in the Osteosarcoma Project.</p> <p>The team is also focused on engaging with new scientific collaborators to help them do more patient-partnered research. “We are hoping to take on new projects,” said Diehl. “If you're interested in doing this type of research, come talk to us.”</p> <p><em>Researchers interested in collaborating on patient-partnered research are invited to contact <a href="mailto:genomics@broadinstitute.org">genomics@broadinstitute.org</a> to learn more.</em></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/broad-clinical-labs" hreflang="en">ӳ����ý Clinical Labs</a></div> <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/genomics" hreflang="en">Genomics Platform</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> </div> </div> </div> </div> </div> Tue, 28 Nov 2023 19:07:09 +0000 kzusi@broadinstitute.org 5556146 at /count-me-in <span class="field field--name-title field--type-string field--label-hidden"><h1>A pioneering effort in patient-partnered cancer research enters a new phase</h1> </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"> <span>By Leah Eisenstadt</span> </span> <span class="field field--name-created field--type-created field--label-hidden"><time datetime="2025-10-08T15:45:02-04:00" class="datetime">October 8, 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>A pioneering effort in patient-partnered cancer research enters a new phase</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><em>Count Me In</em>’s legacy of data and resources will usher in a new way of doing research on other diseases and continue to fuel cancer studies around the globe.</p> </div> </div> </div> <div class="hero-section__author"> <div class="block block-layout-builder block-extra-field-blocknodelong-storyextra-field-author-custom"> By Leah Eisenstadt </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="2025-10-08T15:45:02-04:00" title="Wednesday, October 8, 2025 - 15:45" class="datetime">October 8, 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=6TC0la9c 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/CMI%20story%20images_Main_800x596px.png?itok=Kl6cwmHV 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/CMI%20story%20images_Main_800x596px.png?itok=7pnTSqtp 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/CMI%20story%20images_Main_800x596px.png?itok=9mdX6Dtv 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF 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/CMI%20story%20images_Main_800x596px.png?itok=XSnA_kkF" alt="Three headshot photos of patient participants in cancer research on a blue background." title="Three headshot photos of patient participants in cancer research on a blue background." typeof="foaf:Image" /> </picture> </div> <div class="media-caption"> <div class="media-caption__credit"> Credit: ӳ����ý Communications </div> <div class="media-caption__description"> Since the launch of Count Me In in 2015, thousands of people living with cancer, including (from left) JJ, Carrines, and Kyle, have enrolled in patient-partnered research studies to help advance discoveries that could one day lead to new treatments. </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/2211/feed&title=" target="_blank" title="Share to Facebook" aria-label="Share to Facebook" class="social-sharing-buttons-button 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class="field__item"><article about="/news/how-patient-partnership-propelling-cancer-research" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <a href="/news/how-patient-partnership-propelling-cancer-research"><picture> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=IUwoh5RW 1x" media="all and (min-width: 1921px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=IUwoh5RW 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=cz1rHrLF 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=cz1rHrLF 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=99VdTLtB 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=_dlBinRq 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2022/CMIfeature_web.jpg?h=9423a5c0&itok=_dlBinRq" alt="Patient participants in Count Me In" title="Patient participants in Count Me In" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/how-patient-partnership-propelling-cancer-research" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">How a patient partnership is propelling cancer research</span> </a> </div> </article> </div> <div class="field__item"><article about="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <a href="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots"><picture> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=O6TIoX3o 1x" media="all and (min-width: 1921px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=O6TIoX3o 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=xLZr6NXN 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=xLZr6NXN 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=OuGXEETZ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/Angiosarcoma_story_main_image.jpg?h=d3e04ee7&itok=vtZXFwCq" alt="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" title="Nikhil Wagle and Corrie Painter led a study that revealed angiosarcoma's genetic roots" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/patient-partnered-research-finds-clues-about-rare-cancer%E2%80%99s-genetic-roots" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">Patient-partnered research finds clues about a rare cancer’s genetic roots</span> </a> </div> </article> </div> <div class="field__item"><article about="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node"> <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-ct-sidebar-link-with-image"> <div class="field field--name-field-media-image field--type-image field--label-hidden field__item"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research"><picture> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=a2edP8PD 1x" media="all and (min-width: 1921px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop_xl/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=a2edP8PD 1x" media="all and (min-width: 1601px) and (max-width: 1920px)" type="image/jpeg" width="104" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=o_CAidUb 1x" media="all and (min-width: 1340px) and (max-width: 1600px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_desktop/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=o_CAidUb 1x" media="all and (min-width: 800px) and (max-width: 1339px)" type="image/jpeg" width="87" height="104"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_tablet/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=WaWo41t_ 1x" media="all and (min-width: 540px) and (max-width: 799px)" type="image/jpeg" width="285" height="186"/> <source srcset="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ 1x" media="all and (max-width: 539px)" type="image/jpeg" width="220" height="186"/> <img loading="eager" width="220" height="186" src="/files/styles/multiple_ct_sidebar_link_with_image_phone/public/news/images/2020/jim_chapdelain_main.jpg?h=d3e04ee7&itok=vxxJ85nZ" alt="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" title="An exceptionally long-term survivor of angiosarcoma, Jim Chapdelaine supports others fighting this rare illness and advocates for research into causes and new treatments" typeof="foaf:Image" /> </picture></a> </div> </article> </div> <div class="node__content"> <a href="/news/musician-joins-other-patients-rare-cancer-ignite-research" class="node__title"><span class="field field--name-title field--type-string field--label-hidden">A musician joins other patients with rare cancer to ignite research</span> </a> </div> </article> </div> </div> </div> </div> </div> </div> <div class="clearfix text-formatted field field--name-field-text field--type-text-long field--label-hidden field__item"><p>In 2015, an innovative research initiative called <em>Count Me In</em> launched to give every patient with cancer, no matter where they lived, a way to contribute directly to research and help accelerate advances that could one day lead to new treatments.</p> <p>Since then, the collaboration between the ӳ����ý, the Dana-Farber Cancer Institute, and the Emerson Collective partnered with more than 12,000 people with cancer from across the U.S. and Canada. The participants shared their medical information, DNA samples, and their voices with cancer researchers. Dozens of cancer researchers have used that de-identified data to <a href="/node/1183751">make new discoveries</a> about the genetic roots of a wide range of cancer types, citing <em>Count Me In’s</em> own research papers hundreds of times.</p> <p>Now, the initiative is shifting focus to empower a new wave of discovery, by enabling more investigators to conduct patient-partnered research in cancer and other diseases including rare disease, and by ensuring that data, samples, and insights already generated will continue to help deepen the understanding of cancer.</p> <h2>A new beginning for patient-partnered research</h2> <p><em>Count Me In</em> first began as a single project focused on metastatic breast cancer, and the team soon launched more efforts aimed at other cancers and rare illnesses. Enrollment has now completed for the following projects: Angiosarcoma Project, Brain Tumor Project, Colorectal Cancer Project, Esophageal and Stomach Cancer Project, Metastatic Breast Cancer Project, Metastatic Breast Cancer Project in Spanish, and Metastatic Prostate Cancer Project.</p> <p>Patients can still enroll in projects focused on translocation renal cell carcinoma (<a href="http://trccproject.org" target="_blank">tRCC</a>) and pediatric hepatocellular carcinoma (<a href="http://pedihccproject.org" target="_blank">PediHCC</a>). In addition, enrollment for the <a href="http://osproject.org" target="_blank">osteosarcoma</a> and <a href="http://lmsproject.org" target="_blank">leiomyosarcoma</a> projects, which were funded through a National Cancer Institute grant modeled after <em>Count Me In’s</em> approach, will remain open until December 12, 2025.</p> <p><em>Count Me In</em> will now focus on releasing data into repositories readily accessible to researchers and ensuring that this valuable information continues to advance science. The team recently joined <a href="https://broadclinicallabs.org/" target="_blank">ӳ����ý Clinical Labs</a>, and together they will also work with researchers at the ӳ����ý and beyond who want to initiate patient-partnered studies in cancer and other illnesses.</p> <p>“We can utilize the lessons we’ve learned and the skills, infrastructure, and relationships that we've built over the years to further engage with other communities,” said Elana Anastasio, one of the first <em>Count Me In</em> project managers and now director of patient-partnered solutions for ӳ����ý Clinical Labs.</p> <p>“The merger of our teams represents a new beginning,” said Niall Lennon, chief scientific officer and chair of the board of ӳ����ý Clinical Labs and an institute scientist at the ӳ����ý. “We’ll continue to make the <em>Count Me In</em> datasets available, launch new projects built on the same principles, and apply the ӳ����ý’s cutting-edge technology to accelerate discoveries. Most importantly, we’ll honor what patients taught us: that they don’t just want to be subjects of research, they want to be partners in it.”</p> <p>The success of <em>Count Me In</em> efforts illustrates the benefits of connecting clinicians, advocacy groups, and patients, not only as study participants but as partners in developing study protocols and materials. Since 2015, more than 12,000 individuals living with cancer have enrolled, and more than 150 advocacy groups have been partners.</p> <p>Scientists analyzing <em>Count Me In</em> data have discovered why some cancers are harder to treat or more aggressive. Their work has revealed, for example, mutations that allow tumors to resist certain drugs and other mutations occurring more in tumors that have spread versus those that haven’t. Other research powered by <em>Count Me In</em> data has shed light on cancers that hadn’t been well studied, such as a <a href="/node/627096">study on angiosarcoma</a> that pointed to new ways to treat some patients with the rare cancer.</p> <p>In addition, <em>Count Me In</em> led a wave of patient-partnered studies over the past decade. “We’ve proven that patients are eager to contribute to research,” said Diane Diehl, former director of scientific operations with <em>Count Me In</em> and now head of internal business development for the ӳ����ý Genomics Platform. “And we’ve shown that we can do this and we can expand, especially in rare diseases where you won't have enough people in any one geographic location.”</p> <p>Team members recognize that this work is only possible with the generous contributions and partnerships of people living with cancer and their families. “It's so important to have tissue samples and other data from patients so the world can move forward toward a cure,” said Kyle Brewington, a patient participant in the Osteosarcoma Project.</p> <p>The team is also focused on engaging with new scientific collaborators to help them do more patient-partnered research. “We are hoping to take on new projects,” said Diehl. “If you're interested in doing this type of research, come talk to us.”</p> <p><em>Researchers interested in collaborating on patient-partnered research are invited to contact <a href="mailto:genomics@broadinstitute.org">genomics@broadinstitute.org</a> to learn more.</em></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/broad-clinical-labs" hreflang="en">ӳ����ý Clinical Labs</a></div> <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/genomics" hreflang="en">Genomics Platform</a></div> <div class="field__item"><a href="/broad-tags/cancer" hreflang="en">Cancer</a></div> </div> </div> </div> </div> </div> Thu, 26 Oct 2017 19:23:57 +0000 mnemchuk@broadinstitute.org 129806 at