Longitudinal Endpoint Assessment of Disease Burden in HD
ConditionHuntington Disease
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorHuntington Study Group
About this trial
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
This trial does not accept healthy volunteersQualifiers
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;
Disqualifiers
None
Trial population
Must self-report they have been diagnosed with HD by a doctor or have undergone genetic testing, been found to carry the expanded allele responsible for HD and have no clinical diagnosis (prodromal HD) (HD-ISS Stage 2 or 3).
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
PRO natural history
Obtain PRO natural history data in HD.
Time frame
December 20262
Demographic characteristics
Identify demographic characteristics that are associated with faster or slower disease progression.
Time frame
December 20263
Assess the ability to consent and enroll
Assess the ability to consent and enroll participants in long-term longitudinal studies in HD using a direct-to-patient platform.
Time frame
December 2026Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Huntington Study Group
Lead sponsor
University of Rochester Center for Health + Technology
Collaborator
Modality.AI, Inc
Collaborator
Neurotargeting LLC
Collaborator
Source ClinicalTrials.gov