Building a Framework for Parkinson’s Research

Minnesota’s population continues to age, raising increasing concerns about chronic brain conditions, such as Parkinson’s disease, that can affect older adults.

More than 20,000 Minnesotans are living with Parkinson’s — a degenerative brain disorder that causes shaking, balance problems and slow movements and can lead to other complications — according to the National Parkinson Foundation in Minnesota. The state has one of the highest rates of Parkinson’s in the U.S., and estimates show the disease could grow to affect 30,000 Minnesotans by 2040.1

At the University of Minnesota, researchers are developing a tool that may help turn the tide against Parkinson’s. Working across disciplines, researchers are establishing the first statewide registry of Minnesotans with Parkinson’s, a resource that could dramatically improve future studies on the disease and help reveal which genetic traits and environmental factors add to the risk of developing Parkinson’s.

The project is part of the state-funded MnDRIVE Transdisciplinary Research Program, where researchers from different departments work beyond the limits of their disciplines to address complex challenges.

Lead researcher Tim Church, Ph.D., said this project will not only help investigate the factors that contribute to Parkinson’s disease, but also break down the barriers inhibiting future studies.

“Until now, Parkinson’s research has been hampered by small study sizes and the need to recruit new participants each time, which requires large amounts of time and money,” said Church, a professor of environmental health sciences with the U’s School of Public Health. “Through this sustained, comprehensive effort, we are setting the foundation for future studies that can be conducted more efficiently and with a larger scope. Ultimately, the registry is a tool that will help us better understand Parkinson’s disease, allowing us to develop more effective means to prevent it and treat those who are already affected.”

While scientists are unsure what causes Parkinson’s, they believe a person’s exposure to certain pesticides and minerals increases his or her risk of developing symptoms. They also suspect genetic characteristics could make some individuals more susceptible to those environmental factors.

The registry will contain an ever-growing supply of information gathered on adult volunteers, half of whom will have Parkinson’s and half of whom won’t, recruited from the University of Minnesota Medical Center and Struthers Parkinson Center. The information recorded will range from a person’s occupation to his or her medical history. To better understand what environmental factors may be present, researchers will also collect historical data on soil and water quality across the state, looking for concentrations of pesticides and other contaminants.

As it expands, the registry will become an important platform for neurologists, environmental scholars and geneticists alike, both at the U of M and at fellow research organizations like Mayo Clinic and Struthers Parkinson Center. For example, the registry will allow researchers to run a computer analysis to find patterns between how much exposure patients have had to certain pesticides and whether their genes show susceptibility to the disease.

While any new treatments developed with the help of the registry can improve Minnesotans’ health and quality of life, the project can also help curb the high economic toll of Parkinson’s, which costs Minnesota almost $23,000 a year per patient and exceeded $14.4 billion nationwide in 20101.

Teaming up to Find Treatments

It takes a wide variety of experts to understand how complex environmental and genetic factors can intertwine to affect human health. For that reason, the Parkinson’s registry project reaches across disciplines and beyond the walls of the university to perform more comprehensive research.

One of the many researchers working alongside Church is Deborah Swackhamer, Ph.D., a professor of science, technology and public policy with the U’s Humphrey School of Public Affairs who will study how environmental policy decisions have influenced the degree of exposure Minnesotans have had to pesticides. Another, Jerrold Vitek, Ph.D., of the Department of Neurology, will collaborate with a research team to develop a biological model that will help determine what factors contribute to Parkinson’s disease.

Meanwhile, staff at the University of Minnesota Medical Center and the Struthers Parkinson Center will help identify and recruit research volunteers from within their patient networks to populate the registry. At Mayo Clinic, Dr. James Bower, an associate professor of neurology with Mayo, is examining ways to partner with Church’s efforts at the U of M to build and support the registry.

“The collaboration offers an excellent way to leverage public-private partnerships to improve the care of Minnesotans,” Bower said. “It has the potential to accelerate cutting-edge research in Minnesota and beyond that will help us to better understand the environmental and genetic factors that contribute to Parkinson’s and to come up with new strategies for prevention and treatments for people living with this disease.”

With so many collaborators, Church hopes the Parkinson’s registry will serve as a stepping stone to the development of other shared research tools, such as a statewide system for tracking neurological diseases that would help government and private institutions plan research, health care and work force needs before Minnesota requires them. At the University of California San Francisco, one professor is working to set up a Parkinson’s registry much like the one being set up in Minnesota. Church hopes other states will take up the effort as well.

For now, however, Church is focused on the biggest challenge facing the project: finding sustained funding. While the starting plan allows researchers to collect a total of 1,200 participants for the registry, Church hopes to secure more funding to grow the registry beyond this number and open recruitment to additional clinics. The more people are participating, the more power researchers will have to see patterns and the better those patterns will represent people in different regions across the state. To support a growing and well-maintained registry, the project will need continued funding beyond its MnDRIVE starting amount. He is optimistic, though, given the enthusiastic backing the project has received to-date.

“I am excited and energized by this project,” he said. “The support from medical, industrial, governmental and Parkinson’s communities has been overwhelming.”

This project is supported by MnDRIVE, a landmark partnership between the university and the state of Minnesota that aligns areas of university strength with the state’s key and emerging industries to advance new discoveries that address grand challenges.


1. Kowal SL, Dall TM, Chakrabarti R, Storm MV, Jain A. The current and projected economic burden of Parkinson’s disease in the United States. Movement Disorders 2013;28(3):311-18.