Making Sense of a Positive Genetic Test Result for Huntington Disease

Completed

Conditions studied: Huntington Disease

In brief

This exploratory study will examine ways in which individuals approach a positive genetic test for Huntington Disease (HD). HD is a neurodegenerative disorder that causes emotional, cognitive, and movement problems, and currently there is no way to prevent, stop or reverse the progression of the disease. It is passed down through a mutation in a normal gene, and each child of an HD parent has a 50-50 chance of inheriting the HD gene. The study is designed to explore how individuals adjust to their new genetic status and evaluate any perceived mental or emotional barriers to that adjustment. Currently, little is known about how individuals come to terms with a positive genetic test result for a condition that has no known cure or effective treatment. The results of this study may give health care providers and counselors more information about how to help patients who are at risk for developing HD make sense of their new genetic status. Candidates will be prescreened and referred to the study by clinics that specialize in genetic testing and counseling. Candidates must be 18 years old or older and must have received a positive genetic test result for HD at least one month prior to the study. They must also perceive themselves to be asymptomatic-that is, without existing HD symptoms. During the study, participants will be interviewed and asked a series of questions about their decision to pursue testing, their life since the testing, and the things that they have found helpful or unhelpful since receiving the test results. The interviews will be recorded and will last approximately 60 minutes. Participants also will receive a follow-up phone call within two to three days to ensure their general psychological well-being after the interview.

Key facts

Study ID

NCT00539747

Run by

National Human Genome Research Institute (NHGRI)

People needed

50

Starts

2007-10-01

Expected to finish

2008-08-05

Last updated by the study team

2017-07-02

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 18 years or older
• Able to speak and understand English
• Received results that they believe are positive at least one month ago
• Perceive themselves to be asymptomatic
• Willing and able to read and describe the consent form before the phone interview

You may not qualify if…

• Test result less than a month ago
• Believe that they got a negative test result
• Believe themselves to be symptomatic
• Obvious symptoms of dementia or serious mental illness that would preclude consent

Where it is running

• Johns Hopkins University — Baltimore, Maryland, United States
• National Human Genome Research Institute (NHGRI), 9000 Rockville Pike — Bethesda, Maryland, United States
• University of Pittsburgh — Pittsburgh, Pennsylvania, United States
• Baylor College of Medicine — Houston, Texas, United States

Full record on ClinicalTrials.gov

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