In September 2001, the Huntington Study Group, under the direction of Jane Paulsen, Principal Investigator (University of Iowa), received funding from the National Institutes of Health (NIH) to study healthy persons who are known to have the CAG expansion in the HD gene.

As of December 1, 2007 the PREDICT-HD study has 1,000 participants who dedicate time from their busy lives to contribute to the study!

The PREDICT-HD study uses a variety of tests to examine the nature and pattern of neurobiological changes and neurobehavioral changes that occur in the period leading up to a diagnosis of HD. The intent of the study is to learn more about the beginning changes in thinking skills, emotional regulation, brain structure and brain function as a person begins the transition from health to HD.

Why is PREDICT-HD studying people at risk for Huntington's disease?

• To determine what the earliest signs of HD are and when they begin
• To determine what the most accurate tests are that clinicians can use in detecting the onset of HD
• To determine what factors influence the age at which a person carrying the HD gene develops the illness

We hope that this study may provide some essential information for future trials of experimental drugs for HD. It is necessary to get further information on the early stages of HD in order to develop drugs that can slow or postpone the onset of HD.

Many families have reported that drugs to slow the disease may be more meaningful for at-risk persons. That is, slowing the disease is important to do when a person can remain active in work, parenting and enjoying life (rather than in late stages of HD). To date, little research has been done on individuals who are at risk for developing an inherited disease. We hope this study will help us detect the earliest signs of HD, so that future drug studies can target treatment that may slow the progression or prevent HD.

Who is eligible to participate in PREDICT-HD?

Inclusion Criteria:

• Gene negative and gene positive individuals: specifically, men and women at risk for HD, who have been tested for the HD gene mutation, and who have not been diagnosed with symptoms of HD (CAG ≥39 for CAG-expanded group or CAG <30 for CAG-norm group).
• 18 years of age or older
• Able to commit to a minimum of 4 yearly evaluations
• Commitment of a companion to attend visits or complete surveys via mail
• Able to undergo a MRI

What if I do not want anyone to know I am at risk for HD? How will my privacy be protected?

Privacy is a central concern in PREDICT-HD, and we have designed the study to protect the confidentiality of research participants to the fullest extent possible. Names will not appear on the study forms - instead, a code number will be assigned to identify research participants. A code (different from the participant code) will be used to identify blood samples and DNA results.

I want to help HD research, but would prefer not to learn whether I am developing signs of HD. Is it possible to still participate?

Yes. Participants will not be told if they are developing signs of HD. If participants decide they do want to know this information, they will need to arrange for an evaluation outside of the PREDICT-HD study visits.

Are there any risks to me as a participant in PREDICT-HD?

Uncertainties of not knowing when HD will start may cause distress. There are some minor risks when blood is drawn for the blood sample. These risks are further explained in the consent form, and the research investigator can answer any questions.

What is the benefit to me of participating in PREDICT-HD?

There is no direct health benefit from participating in PREDICT-HD. However, participation may help to provide important information useful for understanding the onset of HD in persons at risk for the illness.

How do I get more information about participating in the PREDICT-HD Study?