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PREVENT-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. Some scientists think that treatments may be more likely to work when the brain is still healthy, rather than later in the disease when many brain cells are gone.

We want to plan for future clinical trials by finding and tracking subtle but measurable changes in behavior, cognition, and emotional responses that occur before the more visible HD symptoms appear.

Location of Study: University of Wisconsin-Madison

We are currently enrolling adults from HD families. This 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)

When you enroll in PREVENT-HD, you will:

  • Complete movement, behavioral, and cognitive tasks
  • Answer some questions about your quality of life
  • Undergo a lumbar puncture to collect cerebral spinal fluid (CSF)
  • Get a brain scan using imaging tools

You will be paid for participating in this study, and we will cover all travel and hotel costs. The study will take roughly five hours to complete over the course of two days.

The measures of motor, thinking, feeling, and functioning skills will take roughly two hours. If you choose to participate in CSF collection, you will return after overnight fasting to have this done the next day. The CSF will take about 2 hours, including allowing an hour of rest. The brain scan will take one hour.

We would like to invite you to join the Huntington's disease (HD) registry at the University of Wisconsin-Madison. By enrolling in the registry your name will be added to a list of people who are interested in participating in HD research studies. With this registry, we hope to increase the understanding of this disease and discover new ways of treating it.
Please visit: https://is.gd/uwmadisonhdregistry

HISTORY BEHIND PREVENT-HD (FORMERLY KNOWN AS PREDICT-HD)

Our team built one of the largest studies to detect and track the earliest signs of Huntington’s Disease (HD). The study was submitted to the NIH in 1999 by members of the Huntington Study Group. PREDICT-HD was funded by five investigator-initiated RO1 grants and sixteen collaborative UO1 grants from the NIH. CHDI also provided funds to expand the research outside of North America and develop the TRACK studies. We connected with over 1,485 participants who are at risk for HD all around the world. This Team Science included over 485 staff and faculty scientists from institutions around the world. We published over 180 peer-reviewed papers in professional journals and we have shared data, biological samples and brain imaging data to other scientists willing to help us learn more about HD. We are now starting new studies, Prevent-HD to lay the groundwork for clinical trials testing new HD therapies in at-risk participants.