PENN STATE SPINA BIFIDA CLINIC REGISTRY DEMONSTRATION PROJECT

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DESCRIPTION (provided by applicant): The Penn State SB Clinic is a longstanding and robust clinic that cares for nearly 500 children and adults with SB. Clinics are staffed by faculty in Pediatric Neurosurgery, Pediatric Orthopedics, Pediatric Urology and Rehabilitation Medicine as well as Physical and Occupational Therapists, Nursing, a Social Worker, and Orthotics. The Penn State Children's Hospital provides inpatient care through a broad wealth of pediatric specialists. Both the Principal Investigator and other personnel in the program have track records of significant dedication to SB both in terms of research and service to the SB Association of America's Professional Advisory Council and Research Foundation. The clinic personnel are all devoted to making such a registry work within our healthcare system and look forward to participating in ongoing research in SB. The program also brings three strengths to its application. First, the clinic serves as one of the only adult SB clinic programs in Pennsylvania. Second, there is an emphasis on delivery of care in a largely decentralized rural environment; linkages with the Pennsylvania Area Health Education Council (AHEC) provide a robust mechanism to accomplish these goals. Third, the demographics of the Penn State SB Clinic are diverse and include patients from both urban and rural settings, as well as a large Amish and Mennonite community through which to study both genetic aspects of SB as well as the delivery of healthcare within an unorthodox healthcare payment system lacking insurance.