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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. Look for them at our upcoming 2011 Iowa Hoop Tour.

In November CHDI announced a worldwide initiative to combine the COHORT and REGISTRY observational studies, (which operate in North America/Australia and Europe) along with new studies in Latin America, Singapore, South Africa and South Korea, into a worldwide initiative called ENROLL-HD.

CHDI Foundation, Inc. is a privately‐funded, not‐for‐profit, virtual biotech company that is exclusively dedicated to rapidly discovering and developing therapies that slow the progression of Huntington’s disease (HD). As a collaborative enabler, CHDI seeks to bring the right partners together to identify and address critical scientific issues and move drug candidates to clinical evaluation as quickly as possible. Our scientists work closely with a network of more than 600 researchers in academic and industrial laboratories around the world in the pursuit of these novel therapies, providing project management to ensure that our common goals remain in focus. More information about CHDI can be found at www.chdifoundation.org.

This project is currently in the planning stages. As more details are developed we will communicate them to you, and to the entire HD community.

As more specific details are developed they will be posted on the national website, www.hdsa.org, and they plan to host webinars for the entire HD community.

Cohort and registry observational studies to combine

The iowa connection

Iowa chapter of the Huntington’s disease society of america