NEW YORK (GenomeWeb) – The Broad Institute announced today that it has partnered with the Biden Cancer Initiative, the Dana-Farber Cancer Institute, the California-based social change group the Emerson Collective, and cancer patients to form a new non-profit cancer research organization called Count Me In.
Count Me In allows cancer patients in the US and Canada to share their medical information, personal experiences, and tumor samples for genetic analysis, the Broad said. Patient information will be rapidly processed, de-identified, and made available to all researchers around the world. 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 combine patient data with information from genetic analysis of tumor, blood, and saliva samples. These data will then be released at regular intervals to provide a continuously growing resource.
The initiative is aiming to sign up more than 100,000 patients across all major cancer types, as well as rare cancers, over the next several years. Count Me In is supported by philanthropy and does not sell patient information, the institute noted. Direct engagement between patients and researchers will be a significant hallmark of the project, and researchers will maintain relationships with participants through online groups and one-on-one communication.
There are currently four projects operating under the Count Me In umbrella: the Metastatic Breast Cancer Project, launched in October 2015; the Angiosarcoma Project, launched in March 2017; the Metastatic Prostate Cancer Project, launched in January 2018; and the Gastroesophageal Cancer Project, which was launched this month. Count Me In plans to launch additional projects in brain cancers, osteosarcoma, pancreatic cancer, lung cancer, colorectal cancer, urinary cancer, ovarian cancer, and others over the next several years.
The Metastatic Breast Cancer Project was launched with the help of social media and patient advocacy groups to connect directly with metastatic breast cancer patients around the country. Researchers used Facebook, Twitter, and patients' own online networks to cast a wide net, enroll a diverse cohort, and investigate the genomic characteristics of "outliers" — those who have had extraordinary responses to cancer therapies and those who are traditionally underrepresented in research. In April 2016, Dana-Farber assistant professor of medicine Nikhil Wagle told GenomeWeb that he and his colleagues wanted to figure out ways to identify patients with the genomic and phenotypic characteristics that could help them answer the research questions they were investigating, without having to wait for them to walk into their institutions.
"Where we have seen the most traction is when other patients put something on their own Facebook pages and Twitter feeds," Wagle said at the time. "This has started to spread even more organically as a patient-driven movement over the last several months."
Since then, thousands of patients have chosen to donate their medical records, tumor samples, and genomic information, and more than 5,700 patients receiving care at more than 1,000 medical centers in the US and Canada have participated in Count Me In projects, according to the Broad.
"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," Wagle, the director of Count Me In, said in a statement today. "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."
The organization also plans to launch a smartphone app in 2019, which will feature a simple sign-up process and will provide additional research project information for participants.
In an op-ed for the Boston Globe today, the Emerson Collective's Reed Jobs and Broad Institute Founding Director Eric Lander noted that speeding progress in cancer research toward better therapies will require enabling cancer patients to become active partners in research.
"Most cancer patients tell us they want to share their information, but there's been no obvious way for them to volunteer. The vast majority of patients are treated outside of large cancer centers, in community hospitals across the country. Because these centers are generally not connected to research institutions, the experience of these patients never helps anyone else," they wrote. "To change this situation, we [created] Count Me In."