RWE Pathway: The State-of-the-art of Patient Registries in Portugal

Abstract Background: Patient registries are one of the main Real-World Data (RWD) sources, which enable different healthcare stakeholders to analyze clinical practice, benchmark them and foster better care. Despite the growing need of RWD, the current use of patient registries in Portugal is not fully understood. This study aims to identify and characterize patient registries in Portugal to set a baseline for future developments in this domain.Methods: A systematic literature review was conducted and complemented with a literature search to identify registries in Portugal.Results: The study identified 108 unique registries in Portugal, 76 collecting data exclusively from Portuguese population. Most belong to medical societies or health authorities and are implemented in hospitals. Cardiology, Oncology, Endocrinology, and Rheumatology are the most studied therapeutic areas. Conclusion: Most registries have a national scope, but several are being used to complement international ones. This practice is common in Europe since guidelines to standardize data collection and foster practice benchmark exist. The majority are owned by medical societies or health authorities and the therapeutic areas seem aligned with health technology innovation. In the future a repository of information needs to be developed that embeds existing registries, to foster collaboration between stakeholders and promote better care.