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Opportunities in clinical research

In the fight to understand Huntington’s Disease (HD), scientists use many different types of research. Generally, the first phase is basic research, which explores the ways that cells and chemicals affect how things work. The second phase is clinical research, which takes basic research data and determines how is can be applied to treat a medical problem. Before all of the amazing laboratory research is accomplished, researchers and doctors must use clinical trials to see what therapies work in humans and how to use them correctly. By volunteering to be part of research, you play a vital role in advancing scientific understanding.

Clinical trials can be used to study drugs, surgical techniques or rehabilitation therapies, and observational trials are important to developing drug trials. These studies attempt to document the symptoms and progression of a disease or condition in order to evaluate the effectiveness of a particular drug or treatment. Before receiving approval, a promising drug or therapy needs to be carefully studied in a closely monitored test group (therapy trials) to determine whether it is safe and effective.

We will be featuring the different research opportunities available at the University of Iowa Hospitals and Clinics. For more information about all of the studies currently underway at the University of Iowa’s Huntington’s Disease Center of excellence clinical and/or research opportunities please contact Anne Leserman, phone: (309)353-4307, or email: anne-leserman@uiowa.edu. Please note: There is no cost to the subject for participating in the research studies.

Hd center of excellence in Iowa is currently recruiting

Below is a list of current and pending projects and trials enrolling participants at the University of Iowa Hospitals and Clinics.  Please note: There is no cost for participating in the research studies.

These are the current studies available at the University of Iowa HD Center of Excellence

If interested in participating, please contact the coordinator listed for more information.

Clinical Drug Trials:

- HORIZON: Must be at least 30 years old, have tested positive for HD, have some clinical features of HD and have some difficulty with thinking abilities. Contact: Elijah Waterman, (319) 353-4131, elijah-waterman@uiowa.edu.

- 2CARE: Must be 16 years or older, in the mild to moderate stages of HD, able to independently walk and fully self-sufficient in activities of daily living. Contact: Nancy Hale, (319) 353-4537, nancy-hale@uiowa.edu.

- HART: Must be at least 30 years old, have tested positive for HD and have some clinical features of HD. Contact: Nancy Hale (see above).

- CIT-HD: Must be between ages 18-65, have tested gene positive for HD or received a clinical diagnosis and notice a change in level of attention, focus and/or thinking ability. Contact: William H. Adams, (319) 353-4411, william-h-adams@uiowa.edu.

Observational studies

- PREDICT-HD: Must be at least 18 years old, have been tested for the HD gene (positive or negative) and presymptomatic. Contact: Anne Leserman, (319) 353-4307, anne-leserman@uiowa.edu.

- COHORT: Must have tested positive for the HD gene; or be at risk for developing HD due to family history; or a caregiver/family member of a COHORT participant. Contact: Anne Leserman, (see above)

Thanks to the staff from the HD Center of Excellence at the University of Iowa for their support of the Hoops and for helping to raise awareness.

The exponential growth of clinical drug trials targeting thinking in HD is continuing with the new HORIZON trial.

HORIZON will examine the effectiveness of Dimebon, an experimental drug, on cognitive abilities and overall functioning in people with HD. The trial will also evaluate behavior and motor symptoms.

The UI is a pending HORIZON site. There are currently 17 sites confirmed to enroll participants in this international trial.

“This trial is exciting because it’s an international effort,” said Dr. Karl Kieburtz, professor of neurology at the University of Rochester and HORIZON principal investigator. “This is the first time that we have had global collaboration on a clinical trial for Huntington’s Disease.”

Trial participants should be at least 30 years old, have tested positive for the HD gene, have clinical features of HD and have some difficulty with thinking abilities.

Participants will either receive daily oral doses of Dimebon or a placebo for 26 weeks. Eight visits and one phone interview will evaluate general health, thinking abilities, memory, mood, and overall functioning and movement.

The goal of this trial is to confirm positive results of an earlier study that suggested Dimebon may improve thinking abilities in persons with HD.

The trial is sponsored by Medivation, Inc. in collaboration with Pfizer, Inc., and is an official Huntington Study Group trial.

Horizon study to begin