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FORCE - University of South Florida - ABOUT Collaboration

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Your real-world experience with HBOC can help us identify and prioritize the most important research questions.

Join our patient-powered network on Facebook to begin sharing your experiences with us!

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FORCE and researchers from the University of South Florida and the Michigan Department of Community Health have formed a collaboration known as the ABOUT Network; a new patient-powered research network that is part of the National Patient-Centered Clinical Research Network (known as PCORnet).  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 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.  Read our press release about the initiative.  

There are several ways for our community to participate in the ABOUT Network.

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 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 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

ABOUT Network Partners

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. Our partners include:

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Black Women’s Health Imperative

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Ovarian Cancer National Alliance

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Sisters Network®

 

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Young Survival Coalition

 


Disclaimer: Health links are made available for educational purposes only. This information should not be interpreted as medical advice. All health information should be discussed with your health care provider. Please read our full disclaimer for more information.

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