Recruiting

Observational Study

Sponsor:

Huntington Study Group

Code:

NCT06475898

Conditions

Huntington Disease

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

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.

Conditions

Huntington Disease

Study ID

NCT06475898

Start date

Jun 25, 2024

Status verified date

Sep, 2025

Completion date

Dec, 2026

Anticipated

Primary completion date

Dec, 2026

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

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:

\-

Study Design

Enrollment

600 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

  • PRO natural history [ Time Frame: December 2026 ]
  • Demographic characteristics [ Time Frame: December 2026 ]
  • Assess the ability to consent and enroll [ Time Frame: December 2026 ]

Central Contacts and Locations

Central contacts

Lauren Falanga

800-487-7671info@myhdstory.org

Locations

Huntington Study Group

Recruiting

Rochester, New York, United States, 14618

Contacts

Lauren Falanga

800-487-7671info@myhdstory.org

More Information

Sponsor

Huntington Study Group

Last update posted

Sep 10, 2025

Last verified

Sep, 2025

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Huntington Study Group on 2025-09-10.