PREDICT-HD is back!

Our lab built one of the largest studies to detect and track the earliest signs of Huntington Disease (HD). The study was called PREDICT-HD. We connected with over 1,400 participants who are at risk for HD all around the world and acquired a great deal of knowledge over 12 years. We are now starting new studies, Predict-HD 3.0, to lay the groundwork for clinical trials testing new HD therapies in at-risk participants.

Currently, at several sites around the world, experimental treatments are being tested in people diagnosed with HD that have shown positive results. The individuals in these studies have already developed symptoms that affect their movement and everyday functioning, which makes it easier to measure how well the treatment is working.

We want to build a case for testing these treatments much earlier in people who are at risk for HD. Starting treatment sooner may help delay the start of symptoms or slow down the progression of the disease. The purpose of our new study is to develop the tools that can be used in clinical trials to measure the effectiveness of treatment before the disease impacts daily life. 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.

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

When you enroll in PREDICT-HD 3.0, 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.

If you want to join our study or learn more, please email or call 319-471-3292. You can also join our registry and we will contact you.