UA-Surveillance of Spina Bifida across the Lifespan
Project Description:
The purpose of this application is to demonstrate our existing capacity to perform population-based surveillance of children and adults with spina bifida (SB). The project will supplement the efforts of the National Spina Bifida Patient Registry but including longitudinal data for individuals who are not being seen at SB clinics. This proposal will address the public health problem described in the background section of the notice of funding opportunity (NOFO) by providing the data needed to estimate prevalence, mortality and survival and assess the longitudinal outcomes from childhood to adulthood. APS is well-positioned to conduct population-based surveillance and multisource data linkage and deduplication for individuals with SB through existing agreements with various organizations.
The purpose of the supplementary application is to conduct a special project intended to improve SB casefinding, reporting and outcome prediction. With the advent for more stringent requirements on electronic health records systems and data use, more emphasis on the use of electronic data extract-transform-load (ETL) processes are applied in population surveillance projects. However, there are notable and variable limitations in these electronic data files which is even more salient in populations with special healthcare needs whose level of function, quality of life and perceived severity is rarely documented in the EHR fields but is included in the notes. We propose to assess the costs and benefits of medical record, ETL, text data natural language processing and manual abstraction with data quality and completeness of cases with SB. APS is well-positioned to conduct this special project capitalizing on our existing population-based surveillance and multisource data availability.
This application addresses our capacity to meet the following NOFO outcomes:
(OC1) Increased access of public health and clinical data on SB by public health and clinical researchers, providers, individuals with SB, and families or caregivers
(OC2) Improved accuracy or efficiency in SB case-finding, reporting, or outcome prediction
(OC3) Improved SB data quality and availability of data for action
Keyword(s):
Clinical Care, Health Equity, Social Determinants of Health, Children, Adolescents, and Young Adults with Special Health Care Needs
Core Function(s):
Performing Research or Evaluation
Area of Emphasis
Health-Related Activities, Other
Target Audience:
Professionals and Para-Professionals, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers, General Public
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Specific Groups
Primary Target Audience Geographic Descriptor:
State
COVID-19 Related Data:
N/A
