Penn State Spina Bifida Clinic Registry

宾夕法尼亚州立大学脊柱裂诊所登记处

• 批准号: 10653045
• 负责人: MARK STEVEN DIAS
• 金额: $ 8万
• 依托单位: PENNSYLVANIA STATE UNIV HERSHEY MED CTR
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10653045
• 关键词: Penn; State; Spina; Bifida; Clinic

ABSTRACT The development and progression of scoliosis in children and adults with myelomeningocele is complex and dependent on multiple neurological and musculoskeletal factors. Root neurosurgical contributors to scoliosis in this population may include hydrocephalus/shunt malfunction, Chiari malformation and syringomyelia, and tethered cord. The PI and team propose to analyze the NSBPR to identify these neurosurgical contributions to the need for scoliosis correction in the myelomeningocele population. The investigators will study the frequency of scoliosis correction as well as the variability among clinics, controlling for age, lesion level, and ambulation status (factors that influence scoliosis frequency and/or progression); analyze correlations with other neurological, urological and orthopedic factors among those undergoing scoliosis correction; identify the frequency of scoliosis correction subsequent to TCR for those presenting with scoliosis as the sole, or as one of other clinical indications for TCR; and compare the frequency of neurological/urological deterioration following scoliosis repair with, and without prior TCR to study whether TCR is necessary prior to scoliosis correction. The Penn State Spina Bifida Clinic (PSSBC) is a multidisciplinary clinic of the Penn State Health Hershey Medical Center (PSHMC), a tertiary/quaternary care University based medical center, and the Penn State Children’s Hospital (PSCH), a free standing Children’s Hospital on the University campus that functions as a regional pediatric referral center for the children of central Pennsylvania. The PSSBC has been in continuous operation for 40 years and currently cares for 563 adult and pediatric patients. The PSSBC has been an active participant in the Spina Bifida Clinic Registry Demonstration Project since 2011, and has enrolled a total of 481 patients (including 188 children and 293 adults) representing 85% of the clinic population. The PSSBC brings a unique research perspective for the spina bifida clinic registry project because 1) the clinic is one of only a few in the United States with a large, active, and growing adult spina bifida clinic; 2) it is one of a few clinics in the United States to serve primarily a rural population and could serve as a model to study the role of a spina bifida clinic in a widespread, decentralized, and mostly rural environment; and 3) the clinic is unusual in caring for a sizable number of individuals from the Amish, Mennonite and Brethren in Christ communities.

抽象的 儿童和成人患有脊髓脑膜静脉曲张的脊柱侧弯的发育和进展很复杂，并且 取决于多种神经和肌肉骨骼因子。根神经外科手术在脊柱侧弯的贡献者 该人群可能包括脑积水/分流功能故障，Chiari畸形和色疗中心，以及 系绳绳。 PI和团队提议分析NSBPR，以确定这些神经外科贡献 需要在脊髓脑化的群中进行脊柱侧弯校正。研究人员将研究频率 脊柱侧弯校正以及诊所之间的变异性，控制年龄，病变水平和救护车 状态（影响脊柱侧弯频率和/或进展的因素）；分析与其他的相关性 接受脊柱侧弯矫正的人的神经，泌尿外科和骨科因素；识别 TCR之后的脊柱侧弯校正频率是脊柱侧弯作为鞋底的人，或者是一种 TCR的其他临床适应症；并比较神经/泌尿外科定义的频率 进行脊柱侧弯的修复，并且没有事先的TCR来研究脊柱侧弯矫正之前是否需要TCR。 宾夕法尼亚州立脊柱裂诊所（PSSBC）是宾夕法尼亚州健康医疗医疗的多学科诊所 中心（PSHMC），位于第三/第四纪医疗大学的医学中心和宾夕法尼亚州立儿童 医院（PSCH）是大学校园中自由居住的儿童医院 宾夕法尼亚州中部儿童儿童转诊中心。 PSSBC一直在连续运行 40年，目前关心563名成人和儿科患者。 PSSBC一直积极参与 自2011年以来，在Spina Bifida Clinic登记示范项目中，总共招募了481名患者 （包括188名儿童和293名成年人），占诊所人口的85％。 PSSBC带来了独特的 Spina Bifida Clinic注册表项目的研究观点是因为1）诊所是其中少数几个 美国拥有大型，活跃且成长的成年脊柱裂诊所； 2）这是曼联的少数几个诊所之一 服务为主要农村人口服务，并可以作为研究脊柱裂诊所的作用的模型 在宽度，分散的，主要是粗糙的环境中； 3）诊所在照顾大量方面很不寻常 基督社区中的阿米什人，门诺派和弟兄的人数。