Longitudinal Endpoint Assessment of Disease Burden in HD

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.

Conditions

Huntington Disease

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Study Overview

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Study Details

Study overview

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.

Longitudinal Endpoint Assessment of Disease Burden in HD

Longitudinal Endpoint Assessment of Disease Burden in HD

Condition
Huntington Disease
Intervention / Treatment

-

Contacts and Locations

Rochester

Huntington Study Group, Rochester, New York, United States, 14618

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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

Ages Eligible for Study

18 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Huntington Study Group,

Jamison Seabury, PRINCIPAL_INVESTIGATOR, University of Rochester Center for Health + Technology

Study Record Dates

2026-12