UA - Spina Bifida - Developing a prospective assessment of the development, health, and condition progression in you children with Spina Bifida
Project Description:
Specific Aim 1: Generate a population-based dataset that can describe the natural history of spina bifida, comorbid conditions, and related complications as baseline data in a longitudinal cohort;
Specific Aim 2: Describe the medical and social services received by individuals with spina bifida and their families, including knowledge of prevention, and whether these vary by race/ethnicity and socioeconomic status.
Specific Aims will be achieved through completion of the following research objectives:
Identify children with spina bifida using state Birth Defects Surveillance Systems.
Recruit children and their families for participation in the study.
Gather data and information using a combination of methods, including interviews, survey, records abstraction, and neuropsychological testing.
Assess the effectiveness of data collection methods.
Assess the outcomes of the project.
Develop recommendations addressing the feasibility of a long-term follow-up, including recommendations for methodology changes based on results from study.
Develop the Project Database to store baseline data and to collect identifying information necessary to maintain contact with members of the study panel and to link baseline data with data collected in future waves.
Core Function(s):
Performing Research or Evaluation, Developing & Disseminating Information
Area of Emphasis
Health-Related Activities, Quality of Life
Target Audience:
Not Applicable
Unserved or Under-served Populations:
None
Primary Target Audience Geographic Descriptor:
State
COVID-19 Related Data:
N/A
