Cerebral palsy symposium brings under-researched disease front and center

It is the most common severe motor disability of childhood, and it often appears in tandem with other disabling conditions such as epilepsy, cognitive impairment, and impaired vision or hearing. Each year, 8,000 U.S. children will be born with cerebral palsy (CP).

The good news: With research collaborations among the University Research Corridor (URC), medical centers, and other partners, the state of Michigan is becoming a national leader in CP research.  The second in the URC Symposium Series, "Developing Multicenter Collaborative Research with the Cerebral Palsy Community", was held in East Lansing on October 19 to explore some of the most promising areas of research and encourage even greater levels of collaboration in this important field. About 70 people attended the one-day event.

The specific goal of the symposium: Foster collaborations in research among Michigan's rich array of researchers interested in the disease, including partners at the URC universities, Michigan Department of Community Health, United Cerebral Palsy of Michigan, clinicians, therapists, educators, and those with the disease.

"Working together in Michigan, we can just get so much more done," says Dr. Nigel Paneth, principal investigator of a CP research team and University Distinguished Professor in the Departments of Epidemiology and Pediatrics and Human Development, College of Human Medicine, Michigan State University.

The state's three major research universities have developed complementary research emphases addressing the affliction. "At Wayne State University, a number of laboratories are exploring some of the things that go wrong that might lead to cerebral palsy; at U-M, there is a very robust research program on the best ways to treat and manage the disease; and here at MSU, we examine risk factors from pregnancy and around birth as clues to what might be causing cerebral palsy," says Paneth.

Dr. Edward A. Hurvitz, associate professor and chair of the University of Michigan's Department of Physical Medicine and Rehabilitation, opened the conference with welcoming remarks: "There is a great deal of exciting research investigating the origins, outcomes and treatments of cerebral palsy in Michigan."

However, many in this scientific and medical community believe that CP is under-researched given its prevalence in the United States. Paneth hopes that one of the outcomes from the conference in East Lansing will be a greater level of visibility for the important advances happening in the state.

"The research effort in cerebral palsy is still inadequate," Paneth says. "Cerebral palsy is an orphan condition in medical research. But I would like to think that people with cerebral palsy and their families will learn from our conference that there are scientists in Michigan who are focusing on the issues."

The conference organizers aim to develop an interactive network of researchers, providers, people with CP, and public health leaders.  Participants connected to develop population-based and clinical research registries for CP, linking Michigan area researchers who can collaboratively apply for funding, carry out studies, and provide joint training opportunities in research.

"With this increasing trend toward collaboration, larger and more sophisticated studies can be mounted," notes Paneth.

The conference participants also have a strong interest in collaborating with affected families, says conference organizer Madeline Lenski, academic specialist at MSU and study office director for the Origins, Wellness and Life History (OWL) project, which is studying causes of the disease. "Research in cerebral palsy involves families with many needs, and we perceived that as researchers it was important to work together with those affected."

The cerebral palsy research conference was the second sponsored by the University Research Corridor as part of its URC Symposium Series, designed to bring together faculty from the three URC universities as well as additional partners to foster greater levels of research collaboration.  The first such event,"Environmental Health Sciences", attracted more than 100 researchers and administrators to develop inter-institutional, multidisciplinary research collaborations in environmental health sciences programs important to the state of Michigan. Two additional events are now  being organized: "Creating, Enhancing, and Sustaining Livable Communities" and "Water Science and Technology".

"We received a total of 36 proposals last spring for conference sponsorship," says URC program director Vince Nystrom.  "University researchers see great potential in working together and fostering a greater level of research activity in areas of mutual interest.  The URC Symposium Series is designed to further facilitate their efforts."