The ABOUT Network is a new opportunity to enroll every person in the United States affected by HBOC into research.
ABOUT is the first ever research registry created and governed by and for people affected by HBOC. The ABOUT Network is a "patient-powered" research registry that is part of the National Patient-Centered Clinical Research Network (known as PCORnet) which will connect health information and electronic health records for 70 million Americans. The ABOUT Network is one of only 29 networks chosen for participation in PCORnet and is the only registry that focuses on cancer or hereditary cancer risk. Our goal is to enroll as many Americans with HBOC as possible into our research registry and to collect information and real world health care experiences that can be used along with information from medical records to improve care for people with HBOC. The more people who agree to participate in the registry, the more helpful this research will be in answering the important questions patients and their doctors face every day. Participation by every person affected by HBOC is vital to the ABOUT Network. To participate, visit: aboutnetwork.org.
Anyone who wishes to help advance HBOC research and who has a personal or family history consistent with HBOC can join, including:
People 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 a co-investigator and 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 include:
About is being led by FORCE and researchers from the University of South Florida. We are partnering with other organizations to achieve our enrollment goals, build an inclusive governance structure, and assure diversity and representativeness in all aspects of the ABOUT Network. Our partners will help us promote research opportunities to their membership, assess the information and resource needs of their constituents, and participate on the ABOUT Network Steering Committee. Visit our Alliances page for a list of our partners.
ABOUT uses engagement surveys to collect and measure real-life experiences, and understand the questions and factors that affect medical decisions and health outcomes of people concerned about or living with a cancer-causing mutation or hereditary cancer risk. We will design and conduct research studies to answer the questions that are highest priority and highest impact for our community.
Any person with hereditary breast and ovarian cancer can complete an engagement survey whether or not they have enrolled in the registry. These engagement surveys are open to participation: