Supplementary Material for: RegisPt: Registry of Registries in Portugal – Design, Data Model, and Functionalities

2017-12-18T14:01:01Z (GMT) by Laires P. Barros V.
Introduction: The number and quality of existing patient registries are not known in Portugal. In order to improve the knowledge regarding this issue, an interactive tool (RegisPt) was developed to identify and characterize all available patient registries in our country. This article aims to describe the RegisPt design, data model, and due functionalities. Methods: RegisPt was developed in Microsoft Office Access 2010 and all variables definitions were done according to standardized international classifications. A review of the available literature and web resources was performed in order to identify all relevant patient registries. Results: The RegisPt platform is divided into 5 core modules containing comprehensive information from each patient registry (general data, registry design, characterization, effectiveness, and publications). Effectiveness is of utmost importance for health technology assessment and is divided into 2 sections: the exposure (health care service, pharmaceutical drugs, and medical devices) and the outcomes (safety, clinical, and economic). The RegisPt platform allows adding and editing registries as well as consulting all available registries in an interactive and user-friendly way, using a preferred query (e.g., registry name, institution, and therapeutic area). About 50 patient registries were identified and characterized in Portugal in accordance with the patient registry definition of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Discussion: The RegisPt is a first step to better understand and use the available resources for health research in Portugal. RegisPt can promote collaboration between researchers and registry owners and encourage the efficient use of resources and may improve the access to registries. This project may also be useful to identify therapeutic areas still lacking patient registries and to optimize existing ones in the country, by comparing registry design, quality, and functional strategies. In the future, this valuable platform may be particularly relevant for researchers and authorities aiming to carry out health technology assessment.