FORCE publishes and distributes hundreds of thousands of educational brochures about hereditary breast and ovarian cancer, insurance issues and our programs and publishes a quarterly newsletter to update our constituents on the latest research, therapies and information for families affected by hereditary breast and ovarian cancer.
FORCE partnered with University of South Florida researchers to apply for a Patient-Powered Research Network Grant, funded by the Patient-Centered Outcomes Research Institute (PCORI). Authorized by Congress, PCORI's research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.
Our proposal builds on FORCE's existing partnership as part of the American BRCA Outcomes and Utilization of Testing (ABOUT) Network, which has enrolled nearly 4,000 participants in long-term follow-up and uses patient-reported outcomes and information from medical records to provide a 'real-world' view of care and outcomes in people who are pursuing BRCA testing. Looking forward, the goal is to ensure that the HBOC community participates at every level of the research process, from research design, identifying studies for our participation, and assessing the unmet research needs of our community. We will begin looking for survivors and previvors who wish to help us shape our research goals, participate in training, and volunteer for leadership roles in developing a hereditary cancer research agenda and plan.
If our grant request is funded (we should know in December), we will have additional resources to expand our network in the following ways: build a secure patient portal for online enrollment of anyone who is interested in participating, include a dedicated ABOUT Network Forum at the annual Joining Forces Conference, grow the FORCE Research Advocate Training Program, and create a biospecimen repository. Grant funds would also allow us to enhance our collaboration with other institutions, advocacy groups, and networks that are interested in patient empowerment.
Stay tuned for upcoming information on the ABOUT Network and how you can become more involved.
Our new search tool will allow members to easily access and filter clinical trials that are specific to BRCA mutations and hereditary cancers. Users will be able to search for studies by phase of research, stage of cancer, intervention, or type of study — prevention, detection, risk, treatment and quality-of-life.