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From Fragmented Evidence to a Unified GCC...
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From Fragmented Evidence to a Unified GCC Demyelinating Disease Registry: A Strategic Framework for MS, NMOSD, MOGAD, Optic Neuritis, LETM, and Pediatric Acquired Demyelination

Abstract

Background: Inflammatory demyelinating diseases of the central nervous system, including multiple sclerosis (MS), aquaporin-4 immunoglobulin G-positive neuromyelitis optica spectrum disorder (AQP4-IgG-positive NMOSD), seronegative NMOSD, myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), recurrent optic neuritis, longitudinally extensive transverse myelitis (LETM), and pediatric acquired demyelinating syndromes, are increasingly recognized across the Gulf Cooperation Council (GCC) countries. Regional evidence remains fragmented, retrospective, disease-specific and unevenly distributed across Bahrain, Saudi Arabia, the United Arab Emirates, Kuwait, Qatar and Oman. Existing data suggest expanding recognition of MS and related demyelinating disorders, but the region lacks a unified prospective platform capable of capturing diagnostic criteria version, antibody testing, imaging, treatment access, longitudinal disability, visual outcomes, pediatric development, real-world treatment safety, pharmacovigilance, health-service equity and precision-management variables across public and private care pathways.Objectives: This strategic framework proposes a unified GCC Demyelinating Disease Registry to transform fragmented evidence into a prospective, interoperable, ethically governed and policy-relevant learning health-system platform for precision neuroimmunology across the Arabian Gulf.Proposed design: The registry would use a modular architecture incorporating a core minimum dataset and disease-specific modules for MS, NMOSD, MOGAD, optic neuritis, LETM, pediatric acquired demyelination, imaging, antibody testing, treatment, relapse, disability, visual outcomes, quality of life, pregnancy, vaccination, infection and long-term safety. Optional extended modules would support approved studies of immunopathology, genetic susceptibility, gene-environment interaction, pharmacogenomics, biomarkers, health economics and therapy response. The technical design should use a pragmatic hybrid model: REDCap or an equivalent electronic case-report form for clinical data entry, an Observational Medical Outcomes Partnership-compatible analytical backend, FAIR-aligned metadata, standardized vocabulary mapping, Observational Health Data Sciences and Informatics-compatible analytics, and privacy-preserving federated reporting. Governance would require national coordinating hubs, hospital registry nodes, pediatric and laboratory-imaging panels, a FAIR-OMOP technical board, transparent publication rules, patient and family input, and explicit protection of national data sovereignty.Expected scientific and clinical impact: A unified GCC registry would enable accurate disease ascertainment, antibody-testing harmonization, diagnostic reclassification, real-world treatment evaluation, pediatric outcome tracking, pharmacovigilance, clinical-trial readiness, health-economic analysis, clinical decision-support development and policy decision-making. It would address GCC-specific challenges, including multinational coordination, expatriate mobility, variable laboratory access, cultural considerations, data sovereignty, shared and partially overlapping ancestral and environmental backgrounds, and equity in biologic treatment access. If adopted across all six member states, the registry could plausibly enroll several thousand patients within five years and, with mature national coverage including expatriate residents, could over the longer term approach the majority of the region's prevalent demyelinating-disease population.Conclusion: A unified GCC Demyelinating Disease Registry would provide the region with a practical, prospective and interoperable infrastructure for surveillance, real-world treatment evaluation, pharmacovigilance, pediatric outcome tracking, clinical decision support and precision-neuroimmunology research. By building on prior Gulf registry experience without duplicating disease-specific initiatives, the proposed framework could transform fragmented national evidence into a coordinated GCC-wide learning health-system platform and a scalable model for other Middle Eastern and North African health systems.

Authors

Alsharoqi IA; Shosha E; Bohlega SA

Publication date

August 24, 2026

DOI

10.20944/preprints202608.1647.v1

Preprint server

MDPI AG

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