Through participation, patients are empowered to help change the future course of cancer.
Some of the most pressing questions in medicine can only be addressed by partnering directly with patients to learn from their experiences. Advances in genomics, bioinformatics, machine learning, and data analytics have created opportunities for designing research projects at a scale once thought impossible — just as social media has allowed patients, advocates, physicians, and researchers to work closely together.
Patients are already closely connected to research through clinical trials, but these trials are often limited to patients who receive treatment at major medical centers. As a result, many patients who would like to contribute their tumor samples, clinical data, and personal experience and knowledge to cancer research have not had a way of doing so.
Through “Count Me In,” we are opening up new opportunities for patients and researchers to accelerate the pace of discovery for therapies and cures. Since late 2015, thousands of women and men living with cancer from around the United States have said “Count Me In” to partnering directly with researchers from the Broad Institute to gain new insights into how tumors develop and why they often resist treatment.
We believe every patient should have the opportunity to engage directly with the scientists who are working to unlock new insights and new opportunities for cancer treatment and care. We are also sharing data openly and as soon as possible with the larger research community to raise the chances of shared success — all while carefully protecting the privacy and trust of the patients who say “Count Me In.”
More than 4,000 patients with metastatic breast cancer have joined this nationwide movement of patients, doctors, and scientists since its launch in October 2015, sharing their stored tumor samples, their medical information, and their voices. The project team at the Broad Institute and Dana-Farber Cancer Institute aims to publicly release — with appropriate patient protections — whole exome sequence and associated demographic and medical history data every six months as the sequence data is generated, so that the research community can together translate this valuable information into new insights into the biology of metastatic breast cancer and how these cancers respond to treatment.
Metastatic Breast Cancer Project posts first wave of genomic, clinical, and patient-reported data to empower research
Coinciding with the second anniversary of the breakthrough patient-driven research movement, this first of many data releases aims to accelerate progress in metastatic breast cancer research.
Learning lessons from the past, MBC Project engages patients to diversify medical research
The Metastatic Breast Cancer (MBC) Project is partnering with and learning from patients and advocates in a shared effort to address disparities in research participation.
Power to the patient
Corrie Painter of the Metastatic Breast Cancer and Angiosarcoma projects and Eliezer Van Allen of the Metastatic Prostate Cancer Project discuss patient engagement, which is critical for advancing our understanding of both common and rare cancers and empowering people to get in the driver's seat of clinical research.
Direct patient engagement through social media speeds recruitment to cancer research study
A crowd-sourcing strategy aimed at accelerating research into metastatic breast cancer has connected advocacy groups, social media, and a dedicated website to register more than 2,000 patients from all 50 states in its first seven months.
Approximately 300 people in the United States are diagnosed with this rare cancer of the blood vessels each year. So far, more than 235 of them have enrolled in the Angiosarcoma Project since its launch in March 2017. Together we are developing a comprehensive resource to drive discoveries about this orphan cancer.
A collaboration between the Broad Institute and Dana-Farber Cancer Institute that partners directly with patients to accelerate and share discoveries in metastatic prostate cancer.