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LEAD-HD: Understanding Huntington Disease Progression

This study, called LEAD-HD, is looking for 600 people with Huntington Disease (HD) or prodromal HD (meaning you have the gene mutation but no symptoms yet) to share their health information. The goal is to understand how HD progresses over time by collecting self-reported health details for 24 months. You can join if you are 18 or older, can give consent electronically, and have a doctor's diagnosis of HD or a genetic test showing the HD gene mutation. The study will measure how your health changes and gather information about participants by December 2026. This is an observational study, meaning no specific treatments are being tested.

Study design
This is an observational study aiming to enroll 600 participants. It is not specified if it is randomized or blinded.
What's involved
You will provide self-reported health information using remote technologies over a 24-month period.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoints are measured at December 2026, indicating a follow-up period until then.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06475898

Longitudinal Endpoint Assessment of Disease Burden in HD

Recruiting
Not specifiedAges 18+Observational
Huntington Study Group
~600 participants
Updated 2025-09-10 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
PRO natural history
Measured over December 2026
+2 more outcomes measured

Conditions

Huntington Disease

Explore related trials

Huntington's DiseaseHTT Gene

NCT06475898

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Huntington Study Group

    Rochester, New Yorkstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Jamison Seabury · PRINCIPAL_INVESTIGATOR · University of Rochester Center for Health + Technology

Who to contact

Lauren Falanga
[email protected]
800-487-7671
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Want this trial checked against your situation?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

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Eligibility criteria

Inclusion

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

What this trial measures

  • PRO natural historyDecember 2026

    Obtain PRO natural history data in HD.

  • Demographic characteristicsDecember 2026

    Identify demographic characteristics that are associated with faster or slower disease progression.

  • Assess the ability to consent and enrollDecember 2026

    Assess the ability to consent and enroll participants in long-term longitudinal studies in HD using a direct-to-patient platform.