Alzheimer’s, Parkinson’s, schizophrenia. All are nightmarish diseases. None can be cured at this time.

A worldwide research effort being spearheaded at University of Iowa Hospitals and Clinics focuses on a condition that encompasses aspects of all three and is just as frightening and, perhaps, even more deadly: Huntington’s disease.

Huntington’s disease, however, is unlike most serious illnesses of the mind because of one distinguishing characteristic. This characteristic—predictability—helps scientists in their quest to learn more about the disease and potential treatments for it.

Jane Paulsen, Ph.D., University of Iowa Health Care professor of psychiatry, neurology, and psychology, explains that because Huntington’s is a dominant genetic disorder, there is a 50 percent probability of someone inheriting the gene from a parent who is a carrier. That’s why Paulsen decided to lead a team of experts in studying how to treat Huntington’s before symptoms ever occur.

“Typically, researchers aim to slow diseases once people are already affected,” Paulsen says. “We want to identify people who have the gene before symptoms occur so we can slow the disease before its onset.”

Paulsen began studying Huntington’s in 1984, and the disease became her major focus in 1990. To Paulsen, the crippling emotional effects of Huntington’s are what sets it apart from other brain disorders. “The thing that’s overlooked is that this is not just one person’s disease. It’s a family’s disease. Carriers know it affects the fate of their family and they are so impassioned about stopping it.”

Assisting Paulsen on the hallmark study are a steering committee from six institutions and the Huntington’s Study Group, a consortium of over 60 institutions throughout North America. The study is currently confined to the United States and Canada, but will eventually include scientists from all over the globe.

Only about 10 of every 100,000 people are carriers of Huntington’s. However, the disease has 750 Iowans on its registry, making UI Hospitals and Clinics an appropriate center for the study. Paulsen is also a co-director of the Huntington’s Disease Center of Excellence, which is one of only a dozen such centers in the U.S.

Because Huntington’s can affect many brain functions—such as physical movement, emotions, and control over thinking—Paulsen said the study will allow scientists to learn more about Parkinson’s, Alzheimer’s, schizophrenia, and other neuro-degenerative diseases.

“Researching this disease will tell us a lot about other brain disorders as well,” she says. “We’re on the cutting edge of what science is doing for Huntington’s.”

Jane Paulsen’s research may determine if it is possible to treat patients with Huntington’s disease before outward symptoms even appear.

“We’re studying healthy people. That is why it’s such a unique idea and the first of its kind.”

—Jane Paulsen, Ph.D.