Research that supports the clinical mission

Anne Berg, PhD

About ten years ago, Douglas Nordli, Jr., MD, Lorna S. and James P. Langdon Chair in Pediatric Neurology and one of the top experts in the field of epilepsy, contacted Anne Berg, PhD, his former colleague from Columbia University to talk about collaborating. Berg, who was also studying epilepsy, had become an internationally recognized researcher into various aspects of the childhood forms. Her main areas of interest were the epidemiology, classification and co-morbidities of epilepsy.

In a bold move to maximize the potential of the top-tier comprehensive epilepsy program at Children’s Memorial Hospital, Nordli, along with Leon Epstein, MD, head of the Neurology Division and Donald L. Shoemaker Professor of Pediatric Neurology recruited Berg in 2009 to lead the epilepsy research effort. For her part, Berg was thrilled at the prospect. “The epilepsy group here is extraordinary from a clinical perspective. Doug Nordli has this fantastic vision of what comprehensive epilepsy care should be. I’m so appreciative of what they do, and I would like to see the approach used here at Children’s become a standard of care nationally. But to know whether the interventions are actually effective, you have to study them. If they can be demonstrated effective, we can start thinking about how such approaches can be developed into a plan for comprehensive epilepsy care that others can adopt elsewhere. Currently we are implementing research studies designed to document the yield and effectiveness of the specialized approaches that are in place at Children’s. This is the first step needed for determining the added value of these programs.”

Most people think of epilepsy as a disorder that is characterized by seizures, and seizures are the most visible – and frightening – aspect of the condition. But, says Berg “increasingly we have become acutely aware that whatever causes a brain to have seizures, no matter how normal that brain may look, can also cause it to have a variety of other problems as well. So we see many behavioral, developmental, cognitive and psychiatric problems in people with epilepsy, especially when the epilepsy starts early in life.”

The epilepsy team is developing ways to address these issues in the clinic. “I’ve been working with the nurse practitioners, Catie Dezort and Breanne Fisher. A few years ago, we got the team together, the two neuropsychologists, Frank Zelko and Julie Rinaldi, the psychiatrist Sigita Plioplys, all of the epileptologists, the social worker Heather Kaplan and the education specialist Robert Blaufuss. We put together a screening program to look for these co-morbidities. Catie and Breanne have been implementing the program in some of their clinics, and we’re evaluating it.” They are asking many questions, including how long the screening takes, how many young children have the co-morbidities and what happens when they are sent for further evaluation. “It’s not an experiment, but in a very systematic way we’re asking if the program is effective in identifying children in need of further evaluation and intervention.”

Breanne and Catie presented their preliminary findings at the American Epilepsy Society Meeting in December. What they are discovering is that a large proportion of children, even established patients, have problems that have not been identified. That’s resulting in further evaluations and referrals for a whole host of interventions, including physical therapy, occupational therapy, speech therapy and psychiatric evaluations. Inferring from other data, Berg thinks that these earlier problems are what drive the later problems when these children become adults. So the team hopes that by intervening early they can change that trajectory.

“We are finding that it’s quite feasible to do the screening. It takes a little bit of resources but not an inordinate amount. We’re trying to figure out how to do this as efficiently as possible, because ultimately we would like to see it transferred into private practice. Why shouldn’t a child going to a private neurologist have this kind of screening too?” Berg asks.

She adds “I need to emphasize that a lot of what we’re doing – autism screening, developmental screening – is not high-tech, but it can make a huge difference. In this country we spend billions on research, but we haven’t spent quite the attention necessary on what we do with information generated by all that research and how it can inform improvements in clinical care.”

Anne Berg, PhD is research professor of Pediatrics at Northwestern University Feinberg School of Medicine, a member of the Neurology Division at Children’s Memorial Hospital and a member of the Clinical and Translational Research Program of Children’s Memorial Research Center.