Global Huntington’s disease registry for gene carriers and controls
Part of Brain & nervous system, Genetic & congenital, Mental health clinical trials.
This study builds a global record of people who carry the Huntington’s (HD) gene change and people who do not. By comparing them over time, researchers hope to better understand how HD begins and progresses.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You must be able to join one of the study groups: HD gene carrier, non-carrier, or a family relative with unclear test results
- If you are a relative with unclear HD gene status, you likely have not had predictive testing yet
- If you are a non-carrier, you have already had predictive testing showing you do not carry the HD gene change
- If you are in the “community control” group, you must be unrelated by blood to an HD carrier and not come from an HD-affected family
- For community controls, you should not have a major brain or nerve condition like stroke, Parkinson’s, or multiple sclerosis
- You may be eligible if under 18 only if you have juvenile-onset Huntington’s disease
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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