Tracking Health Over Time in People With Huntington Disease
Follows adults with Huntington disease over 24 months using remote self-reported health information.
Plain-language title generated from the registry record
Registry title: Longitudinal Endpoint Assessment of Disease Burden in HD
Key facts
- Where
- Rochester, United StatesSee the site
Where in United States
- Huntington Study GroupRochester, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Huntington Study Group
- Trial code
- NCT06475898
- Record updated
- 10 September 2025
- Original description
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.Read full original descriptionShow less
Longitudinal Endpoint Assessment of Disease Burden in HD
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.
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.
Exclusion: -.