OBJECTIVES: Patient registries are one of the main sources of Real-World Data (RWD), 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: Registries were identified considering two key data sources. A systematic literature review was conducted on published papers in Embase, MEDLINE and Cochrane to identify registries used in Portugal between January 1955 to March 2021. This data was complemented with a literature search using Google search engine. Collectively, the data was used to develop a detailed characterization of all registries.

RESULTS: This 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. Additionally, no public data source summarizing information regarding patient registries was found for Portugal.

CONCLUSIONS: Most registries have a national scope, but several are being used to complement international registries. This practice is common in Europe since guidelines to standardize data collection and foster practice benchmark exist. The majority are owned by medical societies as it allows to benchmark clinical practice and help in guidelines review. In contrast, health authorities use it to support health technologies assessments. Registries therapeutic areas seem aligned with health technology innovation. However, primary care is less covered due to difficulty in implementation and management. In the future a repository of information needs to be developed that embeds existing registries, to foster collaboration between stakeholders and promote better care for patients.