Status:
COMPLETED
Genetic Risk: Whether, When, and How to Tell Adolescents
Lead Sponsor:
Johns Hopkins University
Collaborating Sponsors:
National Human Genome Research Institute (NHGRI)
Conditions:
Huntington Disease
Hereditary Breast and Ovarian Cancer
Eligibility:
All Genders
15+ years
Brief Summary
This study is being conducted to learn more about family communication of genetic risk information. Semi-structured interviews lasting up to one hour will be conducted with three populations: parent/c...
Detailed Description
The investigators currently lack an adequate understanding of how parents and children feel about genetic risk/status, how it is communicated, and how it influences wellbeing and family relationships....
Eligibility Criteria
Inclusion
- Parents at-risk for HD, affected by HD, or be the spouse/partner of someone living who at risk for or affected by HD.
- Parents who have or have had a diagnosis of hereditary cancer, or the spouse/partner of someone living who has or has had had a diagnosis of hereditary cancer.
- Children ages 15-17 who are at risk for either HD or hereditary cancer
Exclusion
- Parents and children who have not yet communicated about genetic risk
- Children younger than age 15
Key Trial Info
Start Date :
September 1 2017
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
December 31 2018
Estimated Enrollment :
85 Patients enrolled
Trial Details
Trial ID
NCT03421327
Start Date
September 1 2017
End Date
December 31 2018
Last Update
February 7 2019
Active Locations (1)
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1
Johns Hopkins
Baltimore, Maryland, United States, 21205