NCT06475898 · RECRUITING
Longitudinal Endpoint Assessment of Disease Burden in HD
This study collects self-reported health information from people with Huntington disease, or who carry the gene change but have no diagnosis yet, over 24 months using online surveys. No drug or treatment is being tested. It is a natural history study, meaning researchers observe how the disease changes over time. No phase was listed.
Eligibility criteria
Inclusion Criteria: * Be 18 years of age or older; * Be willing and able to provide informed consent electronically; * Self-report, when answering as a participant, that you have been diagnosed with HD by a doctor, or have undergone genetic testing and been found to carry the gene mutation responsible for HD but have not been clinically diagnosed with HD (prodromal HD); * Have the ability to answer online questions or direct someone else to enter answers for them; * Have the ability to ambulate independently and take care of some of your personal needs; * Have the ability to read and understand English; * Be willing to create a unique identifier based on personal demographic information; * Reside in the United States or its territories. Surveys can only be completed in the US. If you move outside of the US, you will no longer be able to participate; * Own or have access to an electronic device and secure internet connectivity Exclusion Criteria: -
The sponsor's own eligibility wording, lightly reformatted. The study team makes the final eligibility decision — worth discussing with your doctor.
Eligibility criteria as of 2025-09-10