A Systematic Literature Review to Identify Patient Registries in Portugal

Area of Science:

• Health Informatics
• Public Health Research
• Data Management in Healthcare

Background:

• Patient registries are crucial for real-world data (RWD) collection, essential for analyzing clinical practices and improving healthcare.
• The current landscape and utilization of patient registries in Portugal remain underexplored, despite the increasing demand for RWD.

Purpose of the Study:

• To identify and provide a comprehensive overview of existing patient registries in Portugal.
• To understand the current state of RWD collection through patient registries within the Portuguese healthcare system.

Main Methods:

• A systematic literature review (SLR) adhering to PRISMA© guidelines was conducted.
• Searches were performed in Embase®, MEDLINE©, and Cochrane Ovid® databases, supplemented by a Google® search engine review.
• Inclusion criteria focused on patient registries and databases from 1955 to 2021, excluding randomized controlled trials and transversal observational studies.

Main Results:

• A total of 108 unique patient registries were identified, comprising 76 national (70%) and 32 international (30%) registries.
• The majority of national registries (88%) are managed by medical societies and health authorities and are primarily located in hospitals (82%).
• These national registries cover 18 distinct medical specialties, with a significant focus on Cardiology and Oncology.

Conclusions:

• This study provides the first comprehensive overview of patient registries in Portugal, crucial for enhancing the utility of RWD.
• Establishing a centralized, easily accessible repository for all patient registries in Portugal is recommended to improve data dissemination.
• Further in-depth characterization of the 76 national registries is necessary to fully understand their potential and contribution to healthcare research.