Longitudinal Endpoint Assessment of Disease Burden in HD
Huntington Study Group
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.
Description
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.
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- No
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 understa…
Location
- Huntington Study GroupRochester, New York