Researchers, patients with cancer, and philanthropists have come together to launch Count Me In, a nonprofit organization aimed at patient-partnered research. Count Me In allows patients with cancer anywhere in the United States or Canada to easily share their medical information, personal experience, and tumor samples for genetic analysis. Patient information is rapidly processed, de-identified, and made available to 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. Current projects include research investigating metastatic breast and prostate cancers, angiosarcoma, as well as gastroesophageal cancer. Patients with cancer as well as researchers can visit JoinCountMeIn.org to learn more, join in one of the four current projects, or sign up to be updated when other projects launch. The organization also plans to launch a smartphone app in 2019.
Count Me In is being supported by Emerson Collective, a California-based social change organization; Broad Institute of the Massachusetts Institute of Technology (MIT) and Harvard; the Biden Cancer Initiative, an independent nonprofit organization that builds on the federal government’s Cancer Moonshot; and the Dana-Farber Cancer Institute.
Empowering Patients
“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
Nikhil Wagle, MD
a research hospital or not,” said Nikhil Wagle, MD, Director of Count Me In as well as a 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 patients with cancer are cared for in community settings, where this type of research is not done. Count Me In aims to help make that possible.”
Public Databases
With this new model of patient-partnered research, Count Me In teams will 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 be released at regular intervals to provide a continuously growing resource for analysis by researchers.
Eric S. Lander, PhD
“Patients’ medical records, tumor samples, and personal experiences hold myriad clues—about which cancers will respond to or become resistant to which therapies—that often can’t be found in research labs or clinical trials,” noted Eric S. Lander, PhD, Founding Director of Broad Institute of MIT and Harvard and a Co-Chair of Count Me In.
Over the next few years, Count Me In plans to launch additional projects in all major cancer types and many rare cancers, including brain cancers, osteosarcoma, pancreatic cancer, lung cancer, colorectal cancer, urinary cancer, and ovarian cancer. ■
