Huntington Disease
Conditions
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.
Detailed description
The LEAD-HD study will be offered via HSG's online observational research platform called myHDstory®. This direct to patient study will collect and analyze self-reported health information from individuals with Huntington Disease (HD) or prodromal HD in a 24-month longitudinal natural history study that participants complete at any time and with their own electronic device.
Interventions
None listed
Sponsors
University of Rochester Center for Health + Technology
Modality.AI, Inc
Neurotargeting LLC
Huntington Study Group
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
\-
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| PRO natural history | December 2026 | Obtain PRO natural history data in HD. |
| Demographic characteristics | December 2026 | Identify demographic characteristics that are associated with faster or slower disease progression. |
| Assess the ability to consent and enroll | December 2026 | Assess the ability to consent and enroll participants in long-term longitudinal studies in HD using a direct-to-patient platform. |
Countries
United States
Contacts
Primary ContactLauren Falanga
Outcome results
None listed