Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida- Component B

改善脊柱裂患者的护理和结果的研究方法 - B 部分

• 批准号: 10650193
• 负责人: Jeffrey P Blount
• 金额: $ 8万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 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/10650193
• 关键词: Research; Approaches; Improve; Care; Outcomes

Project Summary The University of Alabama at Birmingham (UAB) has been dedicated to the National Spina Bifida Patient Registry (NSBPR) since its inception. The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with spina bifida and established the NSBPR. The goal of this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics and characteristics of individuals with spina bifida. UAB is committed to continue the collection of longitudinal data on children and adults with spina bifida seen in our clinics. These data will be used to promote quality of care by determining best practices through comparing differences in interventions and outcomes among participating clinics. UAB has a unique contribution in that there is both a pediatric and adult multidisciplinary clinic. The pediatric population is more than 500 patients and the adult population is just over 200 patients. Many of these patients have been included in the NSBPR since the beginning and continuing to provide longitudinal data on them is critical to understanding how treatment inventions impact patients over time. UAB has been successful in the previous funding cycles of the NSBPR in terms of patient enrollment, timely reporting, and research presented and published. Two of the major neurosurgical papers produced using NSBPR data were published from UAB. There have also been 17 projects published with contribution from UAB using local and aggregate NSBPR data. If awarded, during the next funding cycle we intend to complete projects using both local and aggregate NSBPR data. Local projects include 1) the assessment of the contribution of baseline sleep studies in patients with and without symptoms for sleep disordered breathing (SDB); 2.) to study the adult population to describe their need for surgical intervention after transitioning to adult care. Projects with aggregate data include 1.) to study SDB using the new NSBPR sleep variables; 2.) to investigate the impact that body mass index plays in ambulation changes over time and 3.) to coordinate a study on the aggregate NSBPR cohort with closed dysraphisms that have not previous undergone surgical intervention. This robust list of projects will provide a great contribution to the understanding of the care of individuals with spina bifida.

项目总结