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

Hereditary Cancer Info > FORCE Publications > Current Newsletter > Patients Power the ABOUT Network

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Patients Power the ABOUT Network

by Lisa Rezende, PhD

ABOUT NetworkThe ABOUT network is the first research registry developed by and for the hereditary cancer community. You decide how much or little you wish to be involved, and choose how to become involved:

  1. Enroll in the registry: Enrollment can be done online in about 20 minutes at aboutnetwork.org. Once registered, you will receive quarterly updates and notification of research studies that might interest you.
  2. Take an engagement survey: Using informal engagement surveys, ABOUT "takes the pulse" of the hereditary cancer community and helps to formulate questions for formal research studies. Our current survey asks about your experiences sharing cancer risk information with adult family members. Past surveys collected women's experiences facing risk-reducing removal of ovaries and fallopian tubes, mastectomy, and surgical menopause.
  3. Free your data: On our website (www.freethedata.us) you can anonymously contribute your mutation data to Clinvar, a public database of genetic mutations.
  4. Spread the word: Patients need to be involved in research; share the value of ABOUT with your blood relatives and friends who are affected by hereditary breast and/or ovarian cancer.

Patients make up the majority of governance of the ABOUT network; volunteer patient advocates sit on the steering committee and all work groups. Graduates of the FORCE Research Advocate Training program are eligible to apply to serve on ABOUT governing bodies. For more information, visit http://www.facingourrisk.org/our-role-and- impact/advocacy/research-advocate-program.php.

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