Individuals Patterns of Disclosure About Huntington s Disease (HD) and the Association With Adaptation to HD

Plain-language summary

This study investigates how people who carry or are at risk for Huntington's Disease (HD) disclose this to others, and how that relates to adapting to the disease. It included people over 18 who tested positive for the HD gene expansion or had a family member with HD. 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.

Trial details

Phase

N/A

Status

Completed

Sponsor

National Human Genome Research Institute (NHGRI)

Start date

6/22/2007

Estimated completion

9/29/2023

Countries

United States

Related genes

Locations

• Bethesda, United States

Eligibility criteria

Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.

* INCLUSION CRITERIA:
* Men and women who self-report:

  * Testing positive for the HD gene expansion, or
  * Not having undergone predictive genetic testing, but having a grandparent, parent, or sibling who has been clinically diagnosed with HD or has tested positive for the HD gene expansion
* Ability to read and write English

EXCLUSION CRITERIA:

* Children younger than 18
* Manifesting HD symptoms, based on self-report
* Received predictive genetic testing within the past 6 months
* Received predictive genetic test result indicating the absence of the gene expansion