Supplementary Material for: A systematic literature review to identify patient registries in Portugal

Introduction: Patient registries are one of the main sources of Real-World Data (RWD), which enables different healthcare stakeholders to analyse and benchmark clinical practice and foster better care. Despite the growing need for RWD, the current use of patient registries in Portugal is not fully understood. This study aims to identify and provide an overview of patient registries in Portugal. Methods: Registries identification included a systematic literature review (SLR) using PRISMA© methodology. An electronic search was conducted in Embase®, Medline©, and Cochrane© using Ovid® software and considering a set of rules and relevant search terms. Patient registries and databases, hospital, primary healthcare and population-based studies between January 1955 and March 2021 were considered while randomized controlled trials and transversal observational studies were excluded. Manual review for validation was performed to identify unique registries. To complement SLR, an additional hand searching was conducted using the Google® search engine. A literature and website search was conducted to provide an overview of the registries identified. Results: From the 108 unique registries, 76 (70%) were classified as national and 32 (30%) as international (with data collected from the Portuguese population). Most national registries were found to be owned by medical societies and health authorities (88%) and are predominantly implemented in hospitals (82%). National registries cover 18 different medical specialties, mostly Cardiology and Oncology. Discussion: This study identified and provided an overview of the registries collecting data from the Portuguese population. The study results aim to improve the information available to promote increased utility of RWD at both national and international levels. In the future, an easy access and centralised repository, aggregating all patient registries, should be created in Portugal to disseminate information. Additionally, an in-depth characterization of the 76 national registries must be performed to better understand and clarify their potential and usefulness.