Common data elements of cerebral palsy registries in Arabic-speaking countries: A scoping review

To (1) identify and extract common data elements (CDEs) reported in registry- and population-based cerebral palsy (CP) studies in Arabic-speaking countries (ASCs), (2) compare reporting across study designs to ensure consistency of extraction and comparability of CDEs, (3) classify reporting consistency of the CDEs across six categories of frequency of reporting, and (4) assess the alignment of CDEs with data elements from international registry networks.

The review was conducted using the JBI methodology for scoping reviews and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines. The Rayyan web application was used as a screening tool. Thirty-eight studies from 11 ASCs were analyzed. CDEs were extracted and grouped by frequency and thematic domains. Fisher's exact test and Cohen's kappa (κ) measured agreement across study types and with three international CP registry networks.

Across 38 studies, core demographic and clinical CP classification data (age, sex, motor type, and topographical distribution) and birth-related characteristics (gestational age, birthweight, and mode of delivery) were consistently reported. Functional classifications, parental demographics, socioeconomic status, and rehabilitation services were less frequently included, particularly in population-based studies. Agreement with international registries was fair with the Australian Cerebral Palsy Register (κ = 0.26) and Global Low and Middle Income Cerebral Palsy Registers (κ = 0.24), but only slight with the Surveillance of Cerebral Palsy in Europe (κ = 0.17). Twelve elements were consistently reported across ASC studies and all three registry networks, covering demographic, perinatal, and core functional classifications.

ASC studies capture core CP data but remain inconsistent in reporting functional classifications, family context, and rehabilitation services. Establishing a harmonized minimum data set and registry network for ASCs would strengthen data quality, guide evidence-informed policy, and enhance both regional and global research impact.