Genetic Risk: Whether, When, and How to Tell Adolescents

NCT03421327CompletedOBSERVATIONAL

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/child pairs at risk for Huntington's Disease, parent/child pairs at risk for hereditary cancer, and genetic counselors.

Key Facts

Lead Sponsor

Johns Hopkins University

Enrollment

85

Start Date

2017-09-01

Completion Date

2018-12-31

Study Type

OBSERVATIONAL

Official Title

Genetic Risk: Whether, When, and How to Tell Adolescents

Conditions

Huntington DiseaseHereditary Breast and Ovarian CancerHereditary CancerHereditary Non-polyposis Colon CancerHereditary Non-Polyposis Colorectal Cancer Syndrome

Eligibility

Age Range

15 Years+

Sex

ALL

Inclusion Criteria:

* 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 Criteria:

* Parents and children who have not yet communicated about genetic risk
* Children younger than age 15

Outcome Measures

Primary Outcomes

Qualitative analysis of how parents and children with either Huntington's Disease or hereditary cancer communicate about genetic risk information

Qualitative interview performed at one occasion where the patient describes when and how genetic risk information was disclosed to minor as well as perspectives from both parent and child.

Time frame: 1.5 years

Locations

Johns Hopkins, Baltimore, United States

Genetic Risk: Whether, When, and How to Tell Adolescents