UAB Synopsis, Vol. 26, No. 16, April 30, 2007
The University of Alabama System Board of Trustees established the UAB Center for Pediatric Onset Demyelinating Disease (CPODD) last September, after the National Multiple Sclerosis Society (NMSS) designated UAB’s pediatric onset demyelinating clinic one of six Pediatric Multiple Sclerosis Centers of Excellence in the country. The NMSS network’s primary focus is to develop a national model for pediatric MS treatment programs.
“The establishment of this center, coupled with the NMSS recognition, places UAB at the forefront of efforts to better understand these diseases and the effects of early onset on disease progression.”
Jayne Ness, MD, PhD
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The UAB CPODD provides state-of-the-art multidisciplinary care and support for children, teenagers, and families living with MS and other central nervous system demyelinating diseases. It also offers families resources previously unavailable to help cope with the challenges MS poses to daily living.
“We are the only NMSS center for excellence in the Southeast,” CPODD Director Jayne M. Ness, MD, PhD, assistant professor of pediatric neurology, notes. “The establishment of this center, coupled with the NMSS recognition, places UAB at the forefront of efforts to better understand these diseases and the effects of early onset on disease progression.” Director of UAB’s Multiple Sclerosis Center, Khurram Bashir, MD, MPH, serves as center codirector.
According to the NMSS, 8000 to 10,000 children have MS and another 10,000 to 15,000 have symptoms. The disease is more difficult to diagnose in children than in adults. “Many pediatricians are not familiar with MS. In addition, children may not report symptoms of demyelination, such as vision loss in one eye or numbness on one side of the body, if they are otherwise feeling well. There is no single diagnostic test, but at a minimum diagnosis requires a clinical episode consistent with demyelination of the brain or spine, plus an abnormal MRI and a second episode, or an MRI that worsens over time. Clinicians must consider each child’s symptoms, MRI findings, and laboratory and spinal tap results, and fit the pieces of the puzzle together,” Dr. Ness says.
Furthermore, no consensus treatment guidelines exist for the pediatric population. “We still do not have enough information about MS in children,” Dr. Ness says. “The centers will work together to establish diagnosis and treatment guidelines that can improve disease management strategies for this population,” she says. “
In adults lifelong treatment is recommended after the first demyelinating episode in the setting of specific MRI criteria. We need to carefully diagnose MS in children and adolescents and begin treatment as soon as we are sure it is MS. But we want to avoid overdiagnosing MS and starting expensive medications in a child who does not need them,” Dr. Ness says.
CPODD will build a multiethnic research cohort of children and teenagers with demyelinating diseases from around the country. In conjunction with the NMSS and other pediatric MS centers, researchers will study the pediatric patient population with respect to clinical presentation, neuroimaging, laboratory findings, treatment regimens, neurocognitive functioning, quality-of-life measures, and long-term final outcomes. Directors from the six centers will meet two to four times annually to discuss advancements and share best practices.
The UAB CPODD will provide current, accurate information about MS and related disorders to schools, health care providers, funding agencies, third party payers, the scientific community, and the public, in addition to patients and families.
One of the network’s goals is that no one be denied treatment because of financial need. “We have not turned away any patient for lack of insurance or because they could not afford to travel here,” says center social worker Sarah Middleton, MPH.
Center for Pediatric Onset Demyelinating Disease Open House
May 14 to 15, CPODD and the Alabama chapter of NMSS will host an open house at Children’s Harbor Center for Research and Innovation. Staff from NMSS and NMSS chapters in surrounding states, local clinicians, and other interested parties are invited. The open house will provide an overview of CPODD’s goals, instructions on how to refer patients, details on services, and ways in which participants can partner with this specialized center. For more information, go to http://www.cpodd.peds.uab.edu or contact Sarah Middleton at 205.996.7633 or cpodd@peds.uab.edu.