• what the earliest signs of HD are and when these signs begin
• what the most accurate tests are that clinicians can use in detecting the onset of HD
• what factors affect the age at which a person carrying the HD gene develops the disease.

PREDICT Participating Sites

North America
Baylor College of Medicine; Houston, TX
Colorado Neurological Institute; Englewood, CO
Columbia University Medical Center; New York, NY
Emory University; Atlanta, GA
Hennepin County Medical Center; Minneapolis, MN
Hereditary Neurological Disease Center; Witchita, KS
Indiana University; Indianapolis, IN
Johns Hopkins University; Baltimore, MD
Massachusetts General Hospital; Boston, MA
University of Alberta; Edmonton, Canada
University of British Columbia; Vancouver, BC, Canada
University of Calgary; Calgary, AB, Canada
University of California-Davis; Sacramento, CA
University of California-Los Angeles; Los Angeles, CA
University of California-San Francisco; San Francisco, CA
University of Iowa; Iowa City, IA
University of Kansas; Kansas City, KS
University of Rochester; Rochester, NY
University of Toronto; Toronto, ON, Canada
University of Washington; Seattle, WA
Washington University; St. Louis, MO

Europe
Cambridge Centre for Brain Repair; Cambridge, U.K.
Cardiff University; Cardiff, Wales
Clinical Genetics Centre; Aberdeen, Scotland
Hospital Ramón y Cajal; Madrid, Spain
National Hospital for Neurology and Neurosurgery; London, U.K.
University of Manchester; Manchester, U.K.
University of Ulm; Ulm, Germany

Australia
Graylands, Selby-Lemnos & Special Care Health Services;
Perth, Australia
University of Melbourne; Melbourne, Australia
St. George Health Service; Melbourne, Australia
Westmead Hospital; Sydney, Australia

PREDICT Steering Committee

• Jane S. Paulsen (Principal Investigator)
  
• Michael Hayden (Co-Principal Investigator)
• Elizabeth Aylward (Co-Principal Investigator)
• Mark Guttman
• Elise Kayson
• Karl Kieburtz
• Douglas Langbehn
• Martha Nance
• David Oakes
• Christopher Ross
• Ira Shoulson
• Julie Stout

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

• To determine what the earliest signs of HD are and when these signs 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
  

Who is eligible to participate in PREDICT-HD?

Individuals,

• 26 years of age and older,
  
• who are at risk for HD and have been tested for the HD gene,
• who have never been diagnosed with HD.

We hope that this study will provide some essential information for future trials of experimental drugs for HD.  It is necessary to get 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 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 to detect the earliest signs of HD, so future drug studies can target treatment that may slow the progression of or prevent HD.

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?

If you would like to participate, please contact:

Name: Maggie Burrows
Address: Department of Clinical Neurosciences, Royal Free and University College Medical School, Royal Free Campus, Rowland Hill Street, LONDON, NW3 2PF
Phone Number: 0207 794 0500 ext 36834
E-mail Address: m.burrows@medsch.ucl.ac.uk