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Pediatric Neuromuscular Program

Background: The pediatric neuromuscular program at MCW serves children and adolescents with peripheral nerve and muscle programs of all types. Seeing patients at the Milwaukee and Fox Valley Wisconsin Children’s Hospitals, the program has dedicated Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy (PPMD) clinic certifications. Additionally, we serve as a referral site for patients with various types of neuromuscular issues. We also are a part of the MCW brachial plexus clinic. In this regard, the program is active in both outpatient, inpatient, intra-operative monitoring and procedural testing including EMG/NCS, IOM, muscle biopsies (open and core), biochemical and genetic testing. As part of our program, we do have a multidisciplinary neurogenetic clinic with our genetics colleagues to work to provide diagnoses for patients.

Clinical Mission: The program has 5 multi-disciplinary clinics per month in muscular dystrophy and neuropathies as part of our MDA/PPMD clinics, brachial plexus clinic and neurogenetics clinic. In total, we see about 700 patients with neuromuscular disorders. We use a multidisciplinary approach to provide the best care possible. In our various clinics we have neuromuscular neurologists, pulmonologists, cardiologists, physiatrists, plastic surgeons, geneticists, genetics counselors as well as various therapists and nursing support amongst others who offer a comprehensive approach to our patients.

Education: Our group is dedicated to educating the community, both medical and non-medical, about pediatric neuromuscular diseases. In this regard, our various members have given community talks for advocacy groups, presented at national meetings, as well as worked to with national organizations on developing educational materials. In addition to the teaching provided to medical students and residents at our institution, we are piloting a fellowship training program for a neuromuscular pediatrician in which we are training a pediatrician in the general pediatric issues specific to patients with neuromuscular disease.

Research: The pediatric neuromuscular program has been very involved in research. We are actively recruiting for multiple trials in Duchenne’s muscular dystrophy, involving in registries for neuromuscular diseases as well as engaged in other pediatric neuromuscular research projects. We’ve served as a referral site for the clinical trials we participate in as well as are actively involved in evaluating rare diseases and their potential treatments. In collaboration with our basic science departments, we have an active tissue bank for patients with SMA receiving treatment and have used this information in national reviews of patient outcomes.