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Research & Clinical Trials

The ABOUT Network is a new opportunity to enroll every person in the United States affected by HBOC into research.

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ABOUT Overview

about logo 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.

Who can join the ABOUT Network?

Anyone who wishes to help advance HBOC research and who has a personal or family history consistent with HBOC can join, including:

  • People with a personal or family history of breast, ovarian, prostate, melanoma or pancreatic cancers, regardless of whether they have had genetic testing
  • People with a family history of breast, ovarian, prostate, melanoma or pancreatic cancers who tested negative for BRCA mutations
  • All ovarian cancer survivors
  • All BRCA mutation carriers and their family members (female or male, whether or not they have had cancer, whether or not they have had testing)
  • Anyone whose family has a mutation in any gene that increases risk for breast, ovarian, prostate, melanoma or pancreatic cancers (for example, PTEN or Cowden Syndrome, P53 or Li-Fraumeni Syndrome, PALB2, etc.)
  • Survivors of breast cancer who fit any of the following categories:
    • diagnosed at age 50 or younger
    • have a type known as triple negative breast cancer
    • more than one diagnosis of breast cancer
    • are male
    • have family members who have been diagnosed with breast, ovarian, prostate, melanoma or pancreatic cancers

who force serves

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.

Goals of the Network

Important goals of the ABOUT Network include:

  • conducting rigorous patient-centered outcomes research that answers the questions patients and health care providers feel are most important in order to make informed health care decisions about HBOC prevention, detection, treatment, and quality of life
  • ensuring that research incorporates patient preferences in outcomes
  • ensuring that the HBOC community is guiding the network's research
  • reporting research results back to the community

Network Partnerships

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 Updates: Engagement Surveys, Research Studies and Media Coverage

Engagement Surveys

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.

Open Surveys

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:

Research Results

Media Coverage

ABOUT Frequently Asked Questions

  • Q. How long does it take to enroll in the ABOUT Network?
  • A. The enrollment process takes about 20 minutes. After signing in, you will need to read and sign a consent form, then fill out a brief questionnaire on your personal and family cancer history. You will be asked general demographic uestions such as your age and gender; your personal and family medical history including cancer treatment and prevention; and if applicable, genetic test results
  • Q. I already belong to a research registry, can I still join the ABOUT Network?
  • A. Every research study has different goals and you may participate in more than one.
  • Q. Is there a cost to join ABOUT?
  • A. No, there is no cost to you. Funding for ABOUT comes from the Patient Centered Outcomes Research Institute (PCORI) via the Affordable Care Act.
  • Q. Will I be asked to take a medication?
  • A. You will not be asked to take any medication to participate in ABOUT. We may contact you to let you know about research studies, including treatment studies, for which you might qualify.

Read our full list of ABOUT Frequently Asked Questions.

Enrollment Info

 

FORCE:Facing Our Risk of Cancer Empowered