Woodward CDC NSBPR Registry 2018

PROJECT SUMMARY/ABSTRACT
Spina bifida is the most common complex congenital disorder and has significant impact on health and quality
of life. Although life expectancy has improved for individuals with spina bifida, they continue to experience high
rates of morbidity, low rates of community participation, high health care costs, and for some, lower reported
quality of life. Multidisciplinary spina bifida clinics provide comprehensive, coordinated, family-centered, best
quality care with the goal of promoting the highest level of health, quality of life, independence, and community
participation across the lifespan. High quality evidence to guide these clinics and other providers in providing
the most effective clinical care is limited and a wide variation in care practices exists among clinics. Therefore,
there is a critical need to identify and disseminate evidence-based, standardized clinical care practices that
result in early identification of common complications, timely delivery of cost-effective interventions, and
optimal outcomes and quality of life across the lifespan. The National Spina Bifida Patient Registry (NSBPR)
was established by the Centers for Disease Control and Prevention in 2008 to pinpoint and disseminate best
care practices through longitudinal data collection, analysis, and dissemination of findings. However, variation
in care and health outcomes still exist across multidisciplinary clinics. This proposal aims to advance the
mission of the CDC’s National Center on Birth Defects and Developmental Disabilities to improve the health of
children and adults by promoting health and wellness among children and adults with disabilities. The objective
of this proposal is to identify and disseminate best practices in spina bifida clinical care through improved
NSBPR longitudinal data collection and analysis and linkage of NSBPR with additional electronic health record
(EHR) clinical and administrative data. We aim to 1) identify the clinical care practices associated with best
health outcomes for people living with spina bifida by expanding NSBPR collection to adults, developing
standardized data collection procedures, and increasing linkages between NSBPR and EHR data. We will 2)
advance the evidence base by leveraging our experience implementing standardized care algorithms and our
NSBPR/EHR data linkages to characterize the frequency of sleep disordered breathing (SDB) and the
frequency of associated symptoms of SDB in individuals with spina bifida. We also aim to 3) evaluate the
potential of a standardized manual muscle testing care algorithm implemented by an interdisciplinary team in
the first year of life to predict ambulation at age 5. By investigating the above aims, our team is poised to
improve the quality and utilization of the NSBPR data across multidisciplinary clinics with the purpose of
identifying best clinical care practices that prevent complications and promote optimal health, functional
independence, community participation, and quality of life for children and adults with spina bifida.

Grant Number: 6U01DD001279-05M004
NIH Institute/Center: ALLCDC
Principal Investigator: Ryan Adams