BOSTON & PALO ALTO, Calif.—Researchers, cancer patients and philanthropists have come together to launch Count Me In, a new nonprofit organization and model of patient-partnered research. Count Me In allows cancer patients anywhere in the United States or Canada to easily share their medical information, personal experience and tumor samples for genetic analysis, propelling progress against cancer. Patient information is rapidly processed, de-identified and made available to all researchers worldwide.
Count Me In aims to sign up more than 100,000 patients across all major cancer types, as well as rare cancers, over the next several years. Cancer patients and researchers can visit JoinCountMeIn.org to learn more, join one of the four current projects or sign up to be updated when other projects launch.
Patient information holds important clues that might lead to new therapies or knowledge about who will respond to which treatments, but most of this information is never collected, aggregated or made available for study. One reason is that the vast majority of cancer patients receive treatment in community hospitals and clinics, not at the large academic medical centers that conduct cancer research. Because of this, only a fraction ever have the opportunity to contribute to research that might unlock critical insights.
Count Me In is organized as a 501(c)(3) nonprofit organization designed to benefit patients and researchers. Count Me In is being stewarded by four leading organizations: Emerson Collective, a California-based social change organization; the Broad Institute of MIT and Harvard, a leading nonprofit biomedical research institution; the Biden Cancer Initiative, an independent nonprofit organization that builds on the federal government’s Cancer Moonshot; and the Dana-Farber Cancer Institute, a leading cancer hospital.
The creators of Count Me In stress that the organization is supported by philanthropy and will not sell patient information.
Count Me In began with discussions between Emerson Collective and Broad Institute in 2013 about new approaches for patient-partnered research, which led to projects launched with Dana-Farber Cancer Institute beginning in 2014 to test ideas and create the necessary infrastructure.
Since then, four projects have been launched and thousands of patients have chosen to donate their medical records, tumor samples and genomic information. More than 5,700 patients receiving care at more than 1,000 medical centers across all 50 U.S. states and Canada have participated in Count Me In projects to date.
The current projects are:
- The Metastatic Breast Cancer Project (mbcproject.org), launched in October 2015;
- The Angiosarcoma Project (ascproject.org) launched in March 2017;
- The Metastatic Prostate Cancer Project (mpcproject.org) launched in January 2018; and,
- The Gastroesophageal Cancer Project (gecproject.org), which launched this month.
“Answering many important questions about cancer will require engaging and empowering many more patients as partners and offering the opportunity to participate in groundbreaking research to all people living with cancer, whether they live near a research hospital or not,” said Nikhil Wagle, the director of Count Me In, and medical oncologist and cancer researcher at Dana-Farber Cancer Institute and the Broad Institute. “The challenge has been that most stored tumor samples and medical records have not been available for these types of studies, because most cancer patients are cared for in community settings where this type of research is not done. Count Me In aims to help make that possible.”
“By connecting with patients and advocacy groups through social media, we have been able to build true partnerships with women and men who understand that, although these research projects are not likely to personally help them, their experiences and voices matter and may help change the future for other patients in measurable ways,” added Corrie Painter, associate director of Count Me In and cancer researcher at the Broad Institute. “These patient-partners have helped us design our outreach to engage a more diverse set of people, make consent forms easier to understand, and design entire studies from the ground up.”
With this new model of patient-partnered research, Count Me In teams intend to make information widely available through public databases, such as the cBioPortal for Cancer Genomics and the National Cancer Institute’s Genomic Data Commons. Each research project within Count Me In will collect and de-identify patient data, and combine them with data from genetic analysis of tumor, blood and saliva samples. These data will then be released at regular intervals to provide a continuously growing resource for analysis by researchers.
