Longitudinal Endpoint Assessment of Disease Burden in HD

Status: Recruiting
Location: See location...
Study Type: Observational
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
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:

• 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

Locations
United States
New York
Huntington Study Group
RECRUITING
Rochester
Contact Information
Primary
Lauren Falanga
info@myhdstory.org
800-487-7671
Time Frame
Start Date: 2024-06-25
Estimated Completion Date: 2026-12
Participants
Target number of participants: 600
Sponsors
Leads: Huntington Study Group
Collaborators: Modality.AI, Inc, University of Rochester Center for Health + Technology, Neurotargeting LLC

This content was sourced from clinicaltrials.gov