National SBA Registry Demonstration Project

描述：康涅狄格州儿童医疗中心（CCMC）是一家独立的学术儿童医院和医疗中心，位于康涅狄格州哈特福德，以及马萨诸塞州斯普林菲尔德的Shriner儿童医院，提出了一项计划，参加由美国疾病控制和预防中心赞助的国家脊柱裂登记可行性研究。在这一全国性合作的努力下，CCMC将带来12年来为脊柱裂患者和家庭提供全面、多学科专业护理的经验，完善的研究和管理基础设施来支持临床研究，以及特殊资源，如运动分析中心、研究部和特殊儿童支持中心。这一伙伴关系将允许为新英格兰西部和南部以及纽约州东部接受治疗的所有脊柱裂患者提供统一的服务和服务评估方法。本提案的具体目标是：1。每年向脊柱裂患者登记中心提交125名脊柱裂患者的完整、准确的数据，这些数据来自康涅狄格儿童医疗中心和斯普林菲尔德Shriner儿童医院的脊柱裂诊所，为期三年。以脊柱裂国家注册工具的结构化记录格式提交完整准确的数据。与美国疾病控制和预防中心、脊柱裂协会的代表和其他机构合作，开发和指导对登记数据的分析和研究使用。

DESCRIPTION: The Connecticut Children's Medical Center (CCMC), a free standing, academic children's hospital and medical center based in Hartford, CT and the Shriner's Hospital for Children of Springfield, MA, propose a plan to participate in the national Spina Bifida Registry feasibility study, sponsored by the United States Centers for Disease Control and Prevention. To the efforts of this national collaborative, CCMC will bring 12 years of experience providing comprehensive, multidisciplinary specialty care to patients and families with spina bifida, a well developed investigational and administrative infrastructure to support clinical research, and special resources such as the Center for Motion Analysis, Department of Research and the Special Kids Support Center. This partnership will permit a unified approach to service provision and evaluation of services to all spina bifida patients receiving care in western and southern New England and eastern New York State. The specific aims for this proposal are: 1. To submit complete, accurate data for 125 patients yearly for a three year period from the spina bifida clinics of Connecticut Children's Medical Center and Springfield Shriner's Hospital for Children, to the central repository of the Spina Bifida Patient Registry. 2. To submit complete and accurate data in the structured record format of the Spina Bifida National Registry Tool. 3. To collaborate with the U.S. Centers for Disease Control and Prevention, representatives of the Spinal Bifida Association and others to develop and guide analysis and research use of the Registry data. PUBLIC HEALTH RELEVANCE: The Connecticut Children's Medical Center, a free standing, academic children's hospital and medical center based in Hartford, CT, will collaborate with the Shriner's Hospital for Children of Springfield, MA to enroll spina bifida patients from both institutions in the national Spina Bifida Registry. Dr. Richard Antonelli, MD, nationally recognized expert in quality of care for children with special health care needs will serve as Principal Investigator and join the Centers for Disease Control in a national collaborative to increase the availability of high quality research data to develop national standards for the care of persons with spina bifida. Patients from Connecticut, New York, Massachusetts and other Atlantic states and Puerto Rico will be enrolled in the registry.