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This study explores how people who had presymptomatic genetic testing for Huntington Disease (HD), received a positive result, and still see themselves as symptom-free make sense of that result. It included people over 18 who received a positive result at least one month earlier. It is an observational (non-phase) study and has been completed.
The summary above is a plain-language rendering of the official record. The original English title is shown for reference.
Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.
* ELIGIBILITY CRITERIA: Participants for this study will be men and women, age 18 or older, who have undergone presymptomatic genetic testing for HD, received a positive test result and currently perceive themselves as being asymptomatic. To obtain a range of experiences, the investigator (PR) will attempt to recruit individuals with a range of elapsed time since their positive test result. INCLUSION CRITERIA: * 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 EXCLUSION CRITERIA: * 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