Huntington's Disease Support Information

PREDICT HD Study

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PREDICT HD STUDY

In 1993, I sat with colleagues and HD families and talked about how the gene discovery had given us new hope.  Dreams for drugs to treat HD seemed possible, yet our discussion emphasized how treatment should begin as early as possible, before jobs are lost and childrens soccer games are missed.  We talked about doing research with persons at risk before they become sick and struggled with how to best advance knowledge. 

PREDICT-HD is the result of much teamwork involving late hours and challenges too numerous to detail.  It is a study we consider critical to make a difference in the quality of life for HD families.               

Jane S. Paulsen, PhD, 
Principal Investigator for PREDICT-HD

What is PREDICT-HD?

PREDICT-HD is an observational trial seeking to recruit 500 gene-tested individuals, positive or negative, who are not exhibiting symptoms of HD. The study uses advanced brain imaging and clinical assessments to document very subtle signs of HD, so that treatments to slow disease progression or delay onset can begin before disease symptoms have advanced.

Participants visit once per year, with a companion, for a minimum of four years. Tests include measures of thinking and motor skills, an assessment of emotional well-being, and a non-invasive brain scan (MRI).

The study is being conducted at 20 sites throughout North America, and participants receive partial compensation for their time and travel.

Who is eligible for PREDICT-HD?

Men and women who...

* Are at least 26 years old

* Have been tested for the HD gene (either positive or negative)

* Have not been diagnosed with HD

Who do I contact to be involved in PREDICT-HD?

If you are interested in learning more about this study, please contact the study's recruitment coordinator Elizabeth Penziner at 1-319-353-4292, or call the HSG toll free at 1-800-487-7671, or visit www.huntington-study-group.org