A Systematic Literature Review to Identify Patient Registries in Portugal
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View abstract on PubMed
Summary
This summary is machine-generated.This study identified 108 patient registries in Portugal, with 76 national and 32 international. Most national registries are owned by medical societies and health authorities, primarily in cardiology and oncology, highlighting the need for a centralized data repository.
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.
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