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ABSTRACT: Background
Spina bifida (SB) is a chronic condition requiring lifelong self-management, underscoring the need to establish a dedicated cohort for longitudinal monitoring of health outcomes. The purpose of this study was to describe the development and initial implementation of a single-center prospective cohort study of children with SB and their parents living in South Korea and to describe demographics, clinical outcomes, psychosocial characteristics, and family data for this cohort.Methods
This cohort was established through expert panel formation, identification of health indicators based on the Life Course Model for Spina Bifida, creation of a cohort database system, and quality control planning. Participants, children aged 4-12 years with SB and their parents, were re
SUBMITTER: Yun H
PROVIDER: S-EPMC11613806 | biostudies-literature | 2024 Dec
REPOSITORIES: biostudies-literature