The Inflammatory Bowel Disease Middle East Registry: Challenges Faced, and Lessons Learned from Setting Up a Multi-Country Patient Registry

Abstract

The burden of inflammatory bowel disease is rising globally, including in the Middle East. There is a paucity of real-world data related to the disease and its treatment in many countries in this region. Patient registries can provide real-world evidence of disease incidence and aetiology, treatment and patient outcomes. The authors designed a non-interventional, multicentre registry to evaluate treatment pathways, resource consumption, and clinical outcomes of patients with inflammatory bowel disease in the Middle East. This article describes challenges faced, and lessons learned from setting up the registry. Registry development requires time, effort, expertise, and skills development to be functional and meet international standards. Careful consideration of legal, governance, ethical and financial issues; data protection and control, minimum data set, data quality assurance, data collection methods, inclusion criteria as well as data sources is critical to the development process. Our findings present stakeholders with a guide for the development and implementation of future registries in the Middle East and offer valuable lessons learned that other countries or regions can utilise as they address inflammatory bowel disease burden and establish their own registries.