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.

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.

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:

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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).

The accrued data will help create a patient-reported natural history of HD, clinically meaningful outcomes for clinical trials, a resource to enable respondents to participate in future research, and a shared longitudinal database for researchers to access and analyze de-identified data and publish findings.

2026