Development of a multicenter cerebral palsy registry in three Arabic-speaking countries: Preliminary results

Abstract

Objectives: The objective of the study is to develop a multicenter cerebral palsy (CP) register in Arabic-speaking countries (ASCs) and nationally-driven evidence-based research to better inform clinical practice. Methods: A multicenter CP register study was conducted across five major institutions in three ASCs, namely Egypt, Tunisia, and Qatar. We included 390 children/adolescents, 217 males, who regularly attend the outpatient/inpatient wards aged 2–18 years with a medical diagnosis of CP. A physician-administered de-identified electronic form was used to collect data and collected data comprised patient- and physician-reported items. Results: CP burden was considerable. Perinatal risk factors included: prematurity (27.4%), antenatal illness (23.7%), and neonatal intensive care unit admission (55.1%). Comorbidities: Epilepsy (31.0%), cognitive (32.4%), visual (18.9%), auditory (6.4%), and speech (45.5%) impairments. Comorbidities were significantly correlated with musculoskeletal disease severity, for example, epilepsy (χ 2 = 23.31, P =0.000) and (χ 2 = 32.50, P = 0.000). Healthcare services were underutilized. 86.2% and 85.6% did not receive any form of orthopedic surgery or Botox injections, respectively. Only 59.0% received physiotherapy as part of regular healthcare follow-up. Conclusion: The health burden of CP in the studied sample of ASCs was considerable in terms of potentially controllable risk factors, comorbidities, and disease severity/complications. This suggests that the national burden of CP is substantial. Health policy makers in ASCs are urged to consider the current interpretations. Expanding the coverage of this Arabic CP register by including more participating medical institutions from ASCs can help us arrive at more reliable conclusions and better guide our clinical practice.