Lessons Learned From the Family Gene Toolkit
Completed · Not applicable
Conditions studied: Women With BRCA 1 or BRCA 2 Mutation, Non-tested Female Family Members
In brief
Mutations in the BRCA1/2 genes are the primary cause of hereditary breast/ovarian cancer syndrome. Genetic testing identifies mutation carriers and enables them to manage their cancer risk (i.e. chemoprevention, risk-reducing surgery, or intensive surveillance). However, uptake of genetic testing among at-risk individuals is low, implying that information about the disease and genetic testing is not being communicated effectively among family members. Mutation carriers are distressed about disclosing test results, while their relatives do not understand the implications of a positive test result for their own health. Thus, interventions that support family communication about genetic risk, and address psychological distress of family members could contribute to more effective management of hereditary breast/ovarian cancer. The project aims to develop a family communication and decision-support intervention to 1) increase family communication about BRCA1/2 mutations; 2) reduce psychological distress associated with these mutations; and 3) increase informed decision-making regarding uptake of BRCA1/2 testing among at-risk family members. Focus groups with mutation carriers and at-risk relatives will inform the refinement of the intervention, as well as timing and mode of delivery. Two group, pre-post test study with a new sample of mutation carriers and family members will be used to test the feasibility, acceptability, and effect of the intervention.
Key facts
- Study ID
- NCT02154633
- Run by
- University of Michigan
- People needed
- 13
- Starts
- 2010-09-30
- Expected to finish
- 2017-03-31
- Last updated by the study team
- 2020-02-25
Who can join
Age: 18 and older. Sex: female. Healthy volunteers: accepted.
You may not qualify if…
- Women who have no female relatives
- Women who are unable to consent
- Women who do not have access to the Internet or the computer
Where it is running
- University of Michigan — Ann Arbor, Michigan, United States
Full record on ClinicalTrials.gov
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