PENN STATE SPINA BIFIDA CLINIC REGISTRY DEMONSTRATION PROJECT

描述（由申请人提供）：宾夕法尼亚州立大学SB诊所是一个长期和强大的诊所，照顾近500名儿童和成人SB诊所的工作人员在儿科神经外科，儿科骨科，儿科泌尿外科和康复医学以及物理和职业治疗师，护理，社会工作者和矫形。宾州州立儿童医院通过广泛的儿科专家提供住院护理。该项目的主要研究者和其他人员都有在研究和服务于美国专业咨询理事会和研究基金会的SB协会方面为SB做出重大贡献的记录。临床工作人员都致力于使这样的登记工作在我们的医疗保健系统，并期待着参与正在进行的研究在SB。 该计划还为其应用带来了三个优势。首先，该诊所是宾夕法尼亚州唯一的成人SB诊所项目之一。第二，重点是在基本分散的农村环境中提供保健服务;与宾夕法尼亚地区卫生教育理事会的联系为实现这些目标提供了一个强有力的机制。第三，宾夕法尼亚州立大学SB诊所的人口统计数据是多样化的，包括来自城市和农村环境的患者，以及一个大型的阿米什人和门诺派社区，通过该社区研究SB的遗传方面以及在缺乏保险的非正统医疗支付系统中提供医疗保健。

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.