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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 recruited from a large SB clinic at a tertiary hospital in South Korea. Two approaches were used to collect data: (1) diagnosis and clinical outcomes (e.g., lesion level, surgical history, laboratory results) were collected from the electronic medical record by pediatric nurse practitioners and (2) demographics, psychosocial characteristics and family data were collected from online self-reported questionnaires completed by children with SB and their parents if the child with SB was aged 7–12 years and by only the parents if the child with SB was aged 4–6 years. Results Between September 2022 and September 2023, 162 children (mean age 7.6 ± 2.6 years) and their parents participated, with 35.8% (4–6 years), 29% (7–9 years), and 35.2% (10–12 years). Diagnoses included lipomyelomeningocele (51.2%), myelomeningocele (27.2%), and tethered cord syndrome (20.4%). Clean intermittent catheterization was used by 38.3% and enemas by 22.2%. Moreover, 30.9% experienced urinary incontinence and 26.5% experienced fecal incontinence. Ambulation assistive devices were used by 14.8%, and ventriculoperitoneal shunts by only 4.3%. Conclusions This cohort provides a comprehensive understanding of demographics, and clinical and psychosocial outcomes for children with SB in South Korea. The dataset offers opportunities for data-driven, life-course tailored interventions to meet the specific needs of this population and their families. |
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