Prevent-HD Observational Study

PREVENT-HD (formerly known as PREDICT-HD) invites volunteers to participate in a research study to help develop and refine the tools that can be used in clinical trials to measure the effectiveness of treatment before the disease impacts daily life. We want to build a case for testing these treatments much earlier in people at risk for HD. Starting treatment sooner may help delay the start of symptoms or slow down the progression of the disease. We are currently enrolling adults from HD families. Criteria includes:
- People who have been gene tested for HD, who carry or do not carry the HD gene
- People who have recently been diagnosed with HD and are in the very early stages of the disease
- People who are gene-positive, but are not currently showing any symptoms (pre-symptomatic)

What will we do? You’ll complete cognitive, motor and quality of life tasks. You will donate blood and spinal fluid. We would like you to return 2 more times over the next 2 years, where you’ll complete the same tasks. How long will the study take? The study visit will take approximately 3-4 hours on day one and 2-3 hours on day two. You will donate spinal fluid and blood on day two after fasting overnight.