Longitudinal Endpoint Assessment of Disease Burden in HD

Recruiting now

Conditions studied: Huntington Disease

In brief

LEAD-HD is intended to collect and analyze self-reported health information from individuals with Huntington Disease (HD) or prodromal HD participating in a 24-month longitudinal natural history study using remote technologies.

Key facts

Study ID

NCT06475898

Run by

Huntington Study Group

People needed

600

Starts

2024-06-25

Expected to finish

2026-12-01

Last updated by the study team

2025-09-10

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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

Where it is running

• Huntington Study Group — Rochester, New York, United States (enrolling)

Full record on ClinicalTrials.gov

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