The ABOUT (American BRCA Outcomes and Utilization of Testing) network focuses on hereditary breast and ovarian cancer (HBOC). This PPRN is the product of a nine-year collaboration—led by patient advocates—between Facing Our Risk of Cancer Empowered (FORCE), which is the leading national nonprofit advocacy organization for individuals and families impacted by HBOC, and a team of HBOC researchers at the University of South Florida.
The current scalable research infrastructure, which includes a secure web-based data system and electronic interfaces, supports
- enrollment and longitudinal follow-up,
- patient-reported data collection,
- real-time data sharing across the network, and
- automated data transfer with organizations including health plans (for participant medical claims data) and genetic testing labs (for participant genetic test results).
The work builds on broad recruitment of individuals with HBOC in partnership with health plans.
As a participant in PCORnet, this network will expand recruitment to reach out to all individuals with HBOC in the United States, increase community engagement in research, promote HBOC research opportunities, and optimize enrollment into HBOC-specific studies, as well as report new research findings to the community. This will be accomplished by
- enhancing the ABOUT data system to enable anyone with HBOC to establish a secure account easily that automatically generates an individualized dashboard;
- promoting research collaborations by partnering with related advocacy organizations to expand patient engagement, governance, and representativeness;
- partnering with the Michigan Department of Community Health Cancer Genomics Program to engage and coordinate efforts between all relevant stakeholders;
- expanding data collection to include questionnaires for all relevant patient subgroups: BRCA mutation carriers, including men, who have not have breast or ovarian cancer; breast and ovarian cancer patients; women with metastatic disease; and family members; and
- implementing a biospecimen banking and automated tracking system.