A systematic review of liver disease registries across the globe: design, management and sustainability practices

Abstract Liver disease remains a major health concern globally, especially in the Asia-Pacific region, yet many low-income countries lack robust registries to track and manage it effectively. This systematic review analyzed 139 publications covering 62 liver disease registries to assess their structure, data management, quality monitoring, and sustainability, with the goal of informing registry development in low-resource settings like the Philippines. Most registries (72.6%) focused on a single disease, primarily viral hepatitis and hepatocellular carcinoma, and were commonly found in high-income countries. National-level implementation was typical (50%), though only a third had clear governance structures, and nearly half lacked long-term funding. While half employed quality monitoring, data security measures were often unspecified. The findings underscore the vital role of liver disease registries in improving care and informing policy, while highlighting persistent gaps in governance, standardization, and sustainability.