Bethesda, Maryland 20892

  • Sexuality and Reproductive Issues


RATIONALE: Gathering information from women who are BRCA1 or BRCA2 mutation carriers may help doctors learn how they manage cancer risk and meet the challenges of young adulthood. PURPOSE: This clinical trial is studying the impact of testing positive for the BRCA1/2 mutation in young women who are BRCA1 or BRCA2 mutation carriers.

Study summary:

OBJECTIVES: - Recruit 30-50 BRCA1/2-positive women aged 18-35 to participate in a semi-structured, qualitative methods interview study. - Facilitate focus group including additional mutation-positive women (n = 25-50) to provide feedback regarding results and analyses. - Increase knowledge of young women's experiences in navigating the tasks and challenges of young adulthood, within the context of their experiences as BRCA1/2 mutation carriers, including family history, genetic testing, couple relationships, family formation, and cancer risk management. - Verify new information via focus groups with other mutation-positive individuals. - Disseminate new knowledge via professional presentations and publications. OUTLINE: Participants undergo telephone interviews for approximately 90 minutes, comprising open-ended questions about demographic information and personal history of cancer; four questions about the history of cancer in their families; experiences with genetic testing; couple relationships, including experiences with disclosure of positive mutation status to past, current, and/or future partners; nexus of experiences as mutation-positive and their plans regarding family creation; and questions regarding the use of cancer risk-management and risk-reducing strategies for qualitative analysis of couple and family treatment strategies. Participants also undergo focus group sessions in-person at the Joining FORCEs conference.


DISEASE CHARACTERISTICS: - Completed genetic testing and received a positive test result (i.e., a deleterious or disease-related mutation identified) for BRCA1 or BRCA2 - Experienced or contemplating/planning couple relationship(s), formation of a family, and/or risk management/reduction strategies - Meets ≥ 1 of the following criteria: - Attended the Joining FORCEs 2009 Annual Conference in May 2009 (focus groups) - Previously participated in the Clinical Genetics Branch of NCI Breast Imaging or Hereditary Breast/Ovarian Cancer studies PATIENT CHARACTERISTICS: - Able to speak and understand English with a level of fluency sufficient for completion of a recorded telephone interview - Willing to have interview digitally recorded PRIOR CONCURRENT THERAPY: - Not specified



Primary Contact:

Principal Investigator
Mark H. Greene, MD
Clinical Genetics Branch

Backup Contact:


Location Contact:

Bethesda, Maryland 20892
United States

Clinical Trials Office - Warren Grant Magnusen Clinical Center
Phone: 888-NCI-1937

Site Status: Recruiting

Data Source:

Date Processed: November 27, 2022

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