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LEAD-HD

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Longitudinal Endpoint Assessment of Disease Burden in HD

What is LEAD-HD?

LEAD-HD will enable approximately 300 individuals with HD or prodromal HD to participate in a 24-month longitudinal natural history study using remote technologies to complete the Huntington’s Disease Health Index (HD-HI), the HD Patient Report of Problems (HD-PROP), a Health Literacy Survey and self-reported Total Functional Capacity (TFC). The HD-HI is a valid, disease-specific, patient-reported outcome (PRO) measure designed to assess meaningful changes in patient disease burden. The HD-PROP is designed to capture the verbatim accounts of HD patients, in their own words.

The goals of LEAD-HD are to obtain natural history data in HD, identify demographic characteristics that are associated with faster or slower disease progression, and determine and optimize the responsiveness and participant preferences of the HD-HI.

Jamison Seabury, is the Study Principal Investigator and W. Alex Dalrymple, MD is the Study Co-Principal Investigator.

Eligible participants must meed the following criteria:

  1. Be 18 years of age or older;
  2. Willing and able to provide informed consent electronically;
  3. Individuals answering as a participant 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);
  4. Ability to answer online questions or direct someone else to enter answers for them;
  5. Ability to ambulate independently and take care of some of his or her personal needs;
  6. Ability to read and understand English;
  7. Willing to create a unique identifier based on personal demographic information;
  8. Residing in the United States or its territories;
  9. Owning or having access to an electronic device and secure internet connectivity

To take part in LEAD-HD, visit www.myhdstory.org.

  • New Users: If you’re not registered on the myHDstory® platform, you’ll be guided through a straightforward registration process, after which you can participate in the survey if you qualify.
  • Registered Users: If you’re already a member of the myHDstory® community, simply log in with your existing credentials.

Your input is a cornerstone in the HD research community’s effort to accelerate the development of treatments that make a difference for people affected by HD. The insights gained from this survey are instrumental in:

  • To obtain PRO natural history data in HD using the HD-HI and HD-PROP.
  • To identify demographic characteristics that are associated with faster or slower disease progression.
  • To assess the feasibility of conducting long-term longitudinal studies in HD using
    a direct-to-patient platform.

The duration of the study is 24 months.

Eligible participants will be asked to:

  1. Sign-up to register on the online myHDstory® platform as a new user providing an email address and phone number. If a participant is already a registered user, they will log into the platform. Participants will then have the option to select and register for the LEAD-HD Study and will self-report that they meet all inclusion criteria. Participants must read, understand, agree to, and sign the Informed Consent Form electronically by signing, typing their name, or asking someone else to sign their name on their behalf, if someone is assisting the participant.

  2. Upon enrollment, study participants will be asked to complete a demographics questionnaire, the HD-HI, the HD-PROP, Total Functional Capacity (TFC)-self report, and a Health Literacy Survey at baseline.

  3. At 6, 12, 18, and 24 months, participants will be asked to complete a modified demographics questionnaire, the HD-HI, the HD-PROP, and TFC-self report.

There is no cost to participate in the study.

Enroll Now

Download LEAD-HD Flyer

If you have additional questions about participating in the LEAD-HD Study, please contact HSG.

Email: info@myhdstory.org
Phone: 800-487-7671

LEAD-HD is a collaboration between Huntington Study Group and University of Rochester Center for Health + Technology

Learn more about myHDstory®