Comp B-National Spina Bifida Patient Registry

点击翻译按钮获取中文摘要

DESCRIPTION (provided by applicant): The aims of this project are: 1) to continue to collect data about patients with Spina bifida at Children's Hospital Los Angeles (CHLA) for the National Spina Bifida Patient Registry (NSBPR), to better understand the needs of the population, improve the quality of care for patients and families, and identify areas for future research, and 2) to develop and implement a research plan in a specific area of interest to contribute to the analysis of Registry data. Spina bifida (SB) occurs in 1.9 per 10,000 live births with an estimated 70,000 people in the United States currently living with the condition. SB results from incomplete closure of the neural tube and protrusion of the spinal membrane at 28 days gestation, and includes myelomeningocele, lipomeningocele and meningocele. In myelomeningocele, typical impairments include hydrocephalus, Chiari II malformation, neurogenic bowel and/or bladder resulting in incontinence, muscle weakness and lack of sensation in lower extremities, and cognitive dysfunction. These impairments can have significant impact on day-to-day living and can interfere with school, work and other community activities. Given the myriad symptoms that can be present in SB, the condition can have a significant impact on quality of life. By studying the health of this population, specifically those children and youth who attend specialized Spina bifida clinics, interventions and strategies can be identified to improve access to comprehensive, evidence based, cost effective care and ultimately, to improve the quality of life of individuals living with the condition. This project allows for the identification of innovations that yield the best outcomes, provides a means to share best practices and serves as a platform for multisite research. Data collected by the Registry network provides researchers and clinicians with a robust database to investigate the health status of the population. The findings generated by this research effort have and will continue to generate evidence for clinical interventions to improve the care and quality of life for individuals with Spina bifida. Treatments and outcomes can be compared by clinic, population and geographic region. Objectives of this project include enrollment of 100% of all eligible patients will be approached for enrollment into the Registry, collection and entry of data, participation in all required meetings, collaboration with other site, identification of research and quality improvement opportunities, and dissemination of new knowledge gained.