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NCT00491842 · ClinicalTrials.gov registry record
Individuals Patterns of Disclosure About Huntington s Disease (HD) and the Association With Adaptation to HD
A clinical trial, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 315
- Enrollment target
NCT00491842 is a clinical trial that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 315 participants.
The verdict
NCT00491842 has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 315 participants
- Enrollment target
Study Summary
This study will examine the ways in which people reveal their status as a carrier of Huntington s disease (HD) or of being at risk for the disease. It will explore factors that influence decisions about disclosure and how disclosure is made to family members, partners, and close friends. HD is an inherited, progressive disease. It causes nerve degeneration, motor disturbance, loss of awareness, and psychiatric symptoms. Currently, no effective treatment is available to prevent or delay HD progression. The mean age of onset is 35 to 44 years, and the median survival rate after onset is 15 to 18 years. HD affects about 1 in 10,000 people in the United States, so about 30,000 have HD and more than 200,000 are at risk. Predictive testing for HD has been available since 1993. It can be a life-changing event to learn of being at risk for HD. Disclosure has been studied among people with HD and other diseases, but knowledge about the extent of nondisclosure and disclosure is limited. There is evidence that a person s psychological adaptation to AD may be a factor. Adaptation involves processes that help a person search for meaning in what has happened, attempt to gain control of his or her life, and improve self-esteem in light of the threatening situation. Participants ages 18 and older who have had a positive genetic test result more than 6 months earlier regarding HD or who have a family history of HD but no predictive testing and who do not have symptoms of HD may be eligible for this study. Recruitment is done through HD clinics, support groups, and online websites and mailing listservs. About 260 people will be in the study. Participants will complete a survey taking 30 to 40 minutes to do. Two survey versions are available: for those who are gene carriers and for those at risk. Participants are asked to complete the version applying to them. The survey can be done online or through a hard copy to complete at home and send to NIH. This survey is anonymous. Partici
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 315 participants |
| Start Date | 2007-06-22 |
| Est. Completion | 2023-09-29 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT00491842
The ClinicalTrials.gov registry entry for NCT00491842 describes a study currently listed as completed, categorized as an unspecified phase. The registered enrollment target is 315 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is National Human Genome Research Institute (NHGRI), which has 185 total studies on file at ClinicalTrials.gov.
The record links to 0 conditions, and to 0 interventions.
NCT00491842 reports 0 study locations.
Frequently Asked Questions
What is clinical trial NCT00491842 about?
NCT00491842 is a clinical study titled "Individuals Patterns of Disclosure About Huntington s Disease (HD) and the Association With Adaptation to HD". This study will examine the ways in which people reveal their status as a carrier of Huntington s disease (HD) or of being at risk for the disease. It will explore factors that influence decisions about disclosure and how disclosure is made to family members, partners, and close friends. HD is an i...
What is the current status of trial NCT00491842?
This trial is currently completed. The enrollment target is 315 participants. The study started on 2007-06-22. Estimated completion is 2023-09-29.
Who is sponsoring clinical trial NCT00491842?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
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