Collecting health information from individuals with Huntington Disease
Longitudinal Endpoint Assessment of Disease Burden in HD
This study is collecting health information from people with Huntington Disease to better understand how the condition affects them over time using an online platform.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 600 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Huntington Study Group Research network |
| Locations | 1 site (Rochester, New York) |
| Trial ID | NCT06475898 on ClinicalTrials.gov |
What this trial studies
The LEAD-HD initiative aims to gather and analyze self-reported health data from individuals diagnosed with Huntington Disease (HD) or those in the prodromal stage over a 24-month period. Utilizing the myHDstory® online platform, participants can complete surveys at their convenience using their own electronic devices. This observational study focuses on understanding the natural history of HD through remote technologies, allowing for a comprehensive assessment of disease burden.
Who should consider this trial
Good fit: Ideal candidates include adults aged 18 and older who have been diagnosed with Huntington Disease or are at risk due to genetic testing.
Not a fit: Patients who do not have access to electronic devices or secure internet connectivity may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of Huntington Disease progression and improve patient care strategies.
How similar studies have performed: While similar observational studies have been conducted, this specific approach utilizing remote technologies for longitudinal assessment is relatively novel.
Eligibility criteria
Show full inclusion / exclusion 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: \-
Where this trial is running
Rochester, New York
- Huntington Study Group — Rochester, New York, United States (Recruiting)
Study contacts
- Principal investigator: Jamison Seabury — University of Rochester Center for Health + Technology
- Study coordinator: Lauren Falanga
- Email: info@myhdstory.org
- Phone: 800-487-7671
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.