FORCE - University of South Florida - ABOUT Collaboration
FORCE’s Founder and Executive Director, Sue Friedman is C0-Principal Investigator, along with Dr. Rebecca Sutphen, a physician geneticist and researcher at the University of South Florida, and long-time member of FORCE Board of Directors in a new research network that is part of the National Patient-Centered Clinical Research Network (known as PCORnet). They will co-lead a patient-powered research network focused on Hereditary Breast and Ovarian Cancer (HBOC) called ABOUT (American BRCA Outcomes and Utilization of Testing) Network. ABOUT Network is one of only 29 networks chosen for participation in the new national research network and is the only one of the 29 that focuses on cancer or hereditary cancer risk. The goal of the ABOUT network is to enroll as many Americans with inherited breast or ovarian cancer risk as possible and collect information about their experiences that can be used along with information from medical records to provide a "real-world" view of current care and identify best practices. Read our press release about the initiative.
ABOUT will open for participation soon for anyone with a personal or family history that suggests inherited risk for breast or ovarian cancer (HBOC), regardless of whether they have had genetic counseling or genetic testing and whether they have a BRCA mutation or not. Individuals who participate in the network will be able to securely contribute their data through their own user account and will receive regular updates on the growing number of participants, news from the National Clinical Research Network, how to get involved in a leadership role, and learn findings from the research. As an advocate partner in the collaborative network, FORCE is playing a critical role in the research design, research questions, recruitment, methods and analyses, and governance of the network.
Important goals of the ABOUT Network are:
- ensuring that the HBOC community is guiding the network’s research
- reporting research results back to the community
- sharing BRCA results anonymously to make them widely available by contributing secure data into Clin-Var, the federally-funded, government-maintained, publically-accessible database for sharing information about variants and mutations in human genes
- coming soon…..the ability to include every individual from an HBOC family who wishes to join this consumer-driven research network
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