Research initiative allows anyone with a cancer diagnosis to share their data with research community
BOSTON – Count Me In, a nonprofit cancer research initiative, is inviting all patients across the United States and Canada who have ever been diagnosed with cancer to participate in research and help drive new scientific advancements to transform the future of cancer care. Patients joining Count Me In will be able to easily share their samples, data, health information and personal lived experiences directly with researchers to help accelerate the pace of cancer research and drive to new discoveries.
Since 2015, more than 8,500 patients with specific types of cancer have joined Count Me In and shared their unique medical information and history. Researchers from the Broad Institute of MIT and Harvard and Dana-Farber Cancer Institute use this information to generate databases of clinical, genomic, molecular, and patient-reported data that is then shared widely. Scientists from around the world have used this patient generated data to make discoveries in different areas.
The success of these research initiatives, coupled with the overwhelmingly enthusiastic participation of patients, has led Count Me In to expand and now welcome all cancer patients everywhere as partners in cancer research.
“Every patient's experience with cancer should be counted," said Nikhil Wagle, M.D., director of Count Me In, a medical oncologist and cancer researcher at Dana-Farber and the Broad Institute. “We are thrilled to expand our partnership with patients, so that every person affected by cancer can contribute to the research breakthroughs that will improve our understanding of this disease and ultimately lead to better treatments, improved care and longer lives.”
Patients can participate in Count Me In simply by signing up online at JoinCountMeIn.org. They then share information about their cancer and experience through surveys and provide access to medical records as well as saliva samples and optional blood and/or stored tissue samples for study and analysis. From these important participant contributions, the Count Me In team collects, analyzes, and shares de-identified data with researchers everywhere.
“Patients have the power to advance cancer research in a way that no one else can,” said Laurie Glimcher, MD President and CEO of Dana-Farber. “Expanding Count Me In to all cancer patients will allow the research community to have increased access to vital information that will advance our understanding of cancer and accelerate progress against all types of this disease.”
“Everyone should have the ability to contribute to our understanding of cancer, regardless of where they live, or what type of cancer they are facing,” said Todd Golub, Director of the Broad Institute and member of the faculty of the Dana-Farber and Harvard Medical School. “We’re thrilled that Count Me In is making it possible for many more people to participate without even needing to leave home. By partnering together and connecting with many more patients across all backgrounds and experiences, we hope to deepen our understanding of cancer’s complexity, share data and findings openly with the scientific community, and speed progress toward effective therapies.”
Patients partnering with Count Me In have to date joined projects specific to their type of cancer. The existing projects — The Metastatic Breast Cancer, Angiosarcoma, Metastatic Prostate Cancer, Esophageal and Stomach Cancer, Brain Tumor, and Osteosarcoma Projects — will continue.
The expansion of patients representing all different cancer types, backgrounds, and ages adds tremendous scientific value to the data generated by Count Me In. The inclusion of a larger, more diverse patient population not only enables the deep study of cohorts of patients within a specific cancer, but also enables the collection of cohorts of patients who may receive a particular therapy, share a specific mutation in their tumor or those of a certain age group, regardless of their cancer type.
“Millions of families are impacted by cancer, and through Count Me In, we can make sure every patient’s experience counts toward fully understanding and advancing cancer research,” said Reed Jobs, Managing Director of Health at Emerson Collective and Co-Chair of Count Me In. “We are proud to open our doors to all cancer patients because each patient’s experience brings us one step closer to overcoming cancer.”
Count Me In also seeks to empower individuals living with cancer, including those from marginalized communities who have historically been excluded from research, no matter where they live, to contribute to groundbreaking cancer research. Due to the fact that the majority of cancer patients have not had the opportunity to participate in research — because most cancer patients are cared for in community settings where this type of research is not done — most patients have never been asked if they’d like to contribute their tissue samples and medical information for research.