In the context of work package 5, More-EUROPA is conducting work around adoption and use of patient registries for regulatory and HTA decision-making. One important aim in this regard is to assess stakeholders’ perspectives toward the use of patient registry data for decision-making. Accordingly, European regulators, HTA/payer representatives, and other stakeholders in medicines decision-making were invited to answer a web-based survey.
Based on 191 survey responses spread throughout Europe, we found that stakeholders are generally open to using patient registry data in the future. Additionally, several use-cases for patient registries were identified which are perceived as informative: investigating disease epidemiology, a medicine’s long-term effects, and its safety. As perceived strengths of registry-based studies, we identified their cost and their ability to reach relevant patient populations.
The familiarity and use of guidance for evaluating registry-based studies was also addressed in the survey. In this regard, we found that all stakeholder groups are most familiar with guidance issued by the European Medicines Agency, however a considerable portion of respondents to the survey also indicated that they are not making use of any guidance. This publication summarizes the results of the first of a series of four annual surveys conducted within More-EUROPA, with more updates and longitudinal results expected to be shared by us in the future.
The full publication is freely avaiable via: Stakeholders’ Perspectives Toward the Use of Patient Registry Data for Decision-Making on Medicines: A Cross-Sectional Survey
