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Joining FORCEs Newsletter

Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.

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Our Goal to Enroll: Helping to Accelerate Research

by Sue Friedman

The ABOUT Network Research Registry will save lives through HBOC research.

goal to enrollPeople affected by hereditary breast and ovarian cancer (HBOC) frequently ask us, “What can I do to help accelerate research?” Research is critically important to improve medical care. Every prevention and treatment option for HBOC is a result of past research. HBOC research is challenged by the fact that our community is a subset of the larger cancer community; finding enough volunteers to complete HBOC research studies is critical to their completion. Our new “Goal to Enroll Campaign” encourages every adult affected by hereditary cancer to participate in HBOC-specific research.

To help reach our research goals, FORCE is building the “ABOUT Network,” the first national research registry created by and for the HBOC community. ABOUT is part of a gigantic national resource that will include 70 million patients who are interested in participating in research; this enormous pool of participants will allow us to conduct large research studies that have never before been possible. Input from members of our community will guide ABOUT research to answer questions that people affected by HBOC face every day. You are eligible to join if you are an adult from an HBOC familyL

  • whether you are a survivor or previvorwho is eligible
  • whether or not you have had genetic testing
  • and if tested, whether your results were positive or negative for
    • BRCA
    • PTEN
    • PALB2
    • another mutation linked to cancer.

Enrollees are asked to complete a questionnaire about their health, medical decisions, and quality of life. The information provided will help us answer HBOC research questions and help to improve health outcomes; it will also allow us to notify each participant of studies that might be of interest based on their personal profile. Enrolling is easy: the entire questionnaire takes only about 20 minutes.

Visit aboutnetwork.org for enrollment information.

Feedback

We welcome your feedback. Please send your comments to Sue Friedman or fill out our Newsletter Feedback Form.

New to FORCE? Find the information and support you need.

Recognize a Loved One

Wherever you are in the process of determining your cancer risk or risk management options, there is a good chance that other people are going through the same thing and are available to offer support.

Understanding HBOC and BRCA

The Understanding HBOC & BRCA section of this website has a comprehensive collection of information on a variety of topics, and includes links to further in-depth articles, books and websites.

FORCE:Facing Our Risk of Cancer Empowered