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Data Center Chosen to Foster Research by National MS Society Pediatric Centers of Excellence

Data Center Chosen to Foster Research by National MS Society Pediatric Centers of Excellence

The network ofPediatric Centers of Excellenceestablished by the National MS Society has chosen the Collaborative Studies Coordinating Center at the University of North Carolina to coordinate and expedite its efforts to investigate MS in children. Although the centers have already begun conducting research investigations and presenting the results at international meetings, this center, chosen through a competitive application process, will establish the infrastructure necessary for larger, more comprehensive studies.

Although MS occurs most commonly in adults, estimates suggest that 8,000-10,000 children (defined as up to 18 years old) in the United States have MS, and another 10,000-15,000 have experienced at least one symptom suggestive of MS. Because of the critical need to better understand pediatric MS, the Society established the first-of-its-kind network of six Pediatric MS Centers of Excellence with funding from its Promise: 2010 campaign. Each center offers comprehensive services through multidisciplinary teams including pediatric and adult MS experts.

The centers are working together to improve evaluation and management strategies to enhance diagnosis and care of children with MS and related disorders; develop resources for families, health care professionals and the public; and collect data that will enable large-scale research initiatives. Research into the earliest manifestation of the disease may also lead to insights into its cause and to the development of novel treatments for all people living with MS.

Developing common data collection techniques is essential for this effort. Through a competitive application process, the Collaborative Studies Coordinating Center (CSCC) in the Department of Biostatistics at the University of North Carolina was chosen to coordinate this effort. Since 1971, the CSCC has served as the coordinating center for many multicenter health research projects sponsored by the National Institutes of Health as well as the pharmaceutical industry. The CSCC will visit the centers to understand how each is currently collecting and storing data, and will then create a system for managing, tracking and analyzing the collective network data. Once the data coordination and analysis center is fully functional, efforts will be made to invite additional investigators to participate in data collection and to use the data for research.

Individually, the pediatric centers have already begun reporting findings on children with MS. Their research has involved clarifying diagnostic criteria, evaluating program successes (e.g., therapeutic camps), and exploring how the pediatric population might differ from adults with MS.

Standardizing this research effort will help propel this work toward larger and more comprehensive investigations. Similarly, the Pediatric Centers are developing consensus protocols for conducting MR imaging and neuropsychological testing, and are working toward a formula for making treatment decisions.

Read moreabout pediatric MS.