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NCT06475898Recruiting

Longitudinal Endpoint Assessment of Disease Burden in HD

Source: ClinicalTrials.gov · Last updated 10 Sept 2025 · Not updated for over 12 months - ask the site whether it is still open

Brief summary (registry, in English)

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.

Status (registry)
Recruiting
Study type
Observational
Enrollment
600 (estimated)
First submitted
20 Jun 2024
Start date
25 Jun 2024
Primary completion date
Dec 2026
Lead sponsor
Huntington Study Group
NCT number
NCT06475898

What you commit to

  • Study type: Observational
  • Planned participants: 600
  • From 25 Jun 2024 to the primary completion date, Dec 2026
  • 1 site in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Other

  • \-

Who the study is looking for

  • 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

Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (1)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
Huntington Study Group
Coordinator of this site? Confirm its status
RochesterUnited StatesRecruiting

This page is information, not medical advice. Discuss any trial with your doctor.