NCT06475898 Longitudinal Endpoint Assessment of Disease Burden in HD
| NCT ID | NCT06475898 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Huntington Study Group |
| Condition | Huntington Disease |
| Study Type | OBSERVATIONAL |
| Enrollment | 600 participants |
| Start Date | 2024-06-25 |
| Primary Completion | 2026-12 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 600 participants in total. It began in 2024-06-25 with a primary completion date of 2026-12.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
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.
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: \-
Contact & Investigator
Jamison Seabury
PRINCIPAL INVESTIGATOR
University of Rochester Center for Health + Technology
Frequently Asked Questions
Who can join the NCT06475898 clinical trial?
This trial is open to participants of all sexes, aged 18 Years or older, studying Huntington Disease. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT06475898 currently recruiting?
Yes, NCT06475898 is actively recruiting participants. Contact the research team at info@myhdstory.org for enrollment information.
Where is the NCT06475898 trial being conducted?
This trial is being conducted at Rochester, United States.
Who is sponsoring the NCT06475898 clinical trial?
NCT06475898 is sponsored by Huntington Study Group. The principal investigator is Jamison Seabury at University of Rochester Center for Health + Technology. The trial plans to enroll 600 participants.