A scoping review on the characteristics of chronic pain registries

Abstract

Chronic pain represents a major global public health challenge, yet systematic surveillance through patient registries remains unevenly developed. Pain registries offer valuable real-world data to inform clinical practice, research, and policy; however, their global scope, design characteristics, and data elements have not been comprehensively mapped. This scoping review aimed to identify and characterize existing chronic pain registries worldwide by examining their geographic distribution, registry design, clinical focus, data domains, and methodological features, including population characteristics, data collection methods, clinical and patient-reported outcomes, follow-up practices, and governance structures. Multiple electronic databases and registry-specific sources were systematically searched to identify chronic pain registries. A total of 36 chronic pain registries were identified across multiple continents, with detailed dataset information available for 16 registries. Registries were predominantly concentrated in high-income countries, particularly Europe and North America, with minimal representation from low- and middle-income regions. Most registries captured broad chronic pain populations, whereas condition-specific registries primarily focused on headache and migraine and fibromyalgia. Considerable heterogeneity was observed in registry scale, maturity, and data domains. Although pain intensity and patient-reported outcomes were commonly recorded, key elements such as pain mechanism classification, socioeconomic variables, and economic evaluations were inconsistently reported. To conclude, the global chronic pain registry landscape remains fragmented, with substantial geographic and methodological disparities. Harmonized data standards, broader geographic representation, and incorporation of mechanism-based and socioeconomic data are essential to enhance the comparability, translational value, and equity in chronic pain research worldwide.