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

Completed

Conditions studied: Huntington Disease, Hereditary Breast and Ovarian Cancer, Hereditary Cancer, Hereditary Non-polyposis Colon Cancer, Hereditary Non-Polyposis Colorectal Cancer Syndrome

In brief

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

Study ID

NCT03421327

Run by

Johns Hopkins University

People needed

85

Starts

2017-09-01

Expected to finish

2018-12-31

Last updated by the study team

2019-02-07

Who can join

Age: 15 and older. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• 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

You may not qualify if…

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

Where it is running

• Johns Hopkins — Baltimore, Maryland, United States

Full record on ClinicalTrials.gov

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