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Jonathan Santoro, MD, has an ambitious goal for his patients with pediatric multiple sclerosis (MS): zero disability.
“It’s an extreme goal,” he says. “But by starting patients on early and aggressive disease-modifying therapy, the aim is that they don’t have any more relapses. And by preventing relapses, we can prevent disability.”
Dr. Santoro, Director of Pediatric Neuroimmunology and Demyelinating Disorders at Children’s Hospital Los Angeles, launched the hospital’s multiple sclerosis program in August 2019.
Today, it’s one of the largest and fastest-growing pediatric MS programs in the nation. Designated as a Partner in MS Care by the National Multiple Sclerosis Society, the clinic takes a multidisciplinary approach and includes pediatric neurologists Nusrat Ahsan, MD, and Wendy Mitchell, MD, as well as nurse Kelli Paulsen, RN, who is certified by the Consortium of Multiple Sclerosis Centers (CMSC).
MS is a chronic disease where the immune system attacks the brain and spine, damaging myelin (the protective coating that wraps around nerve fibers), the cells that make myelin, and the nerve fibers themselves. The disease mostly affects adults, but about 5% of patients develop it before age 18.
Treatment with immune-modulating therapies can slow disease progression and reduce relapses, but traditionally, it could take years for a child to be diagnosed and referred to specialized care. Even then, obtaining insurance approval for MS medications can often be a long process, creating more delays.
Dr. Santoro and his team have implemented several innovative measures to support patients and help them start treatment quickly:
In addition to participating in multicenter clinical trials of new MS therapies for children, the team is conducting its own research on how—and why—the disorder impacts children and adolescents.
For example, Dr. Santoro was first author on a recent publication in Neurology that found that cognitive disability—not motor disability—is more prominent in pediatric MS patients. The team also has received a grant from Race to Erase MS to study the role of sex and stress hormones in the development and aggression of pediatric MS. The studies are part of The Saban Research Institute of Children’s Hospital Los Angeles.
“We want to advance our understanding of what causes MS in younger people,” he says. “That will hopefully pave the way for new treatments in the future and the absolute best outcomes for patients.”