Policy makers and national patient registry experts from BeNeLuxA countries, Hungary and the United Kingdom met in Vienna on 28 November 2017 to explore a possible collaboration in the field of patient registries in order to increase efficiency, and enhance evidence generation and information sharing.
The meeting aimed to identify the challenges and prerequisites for collaboration in the field of patient registries, and ways to move forward. As a supportive exercise, results of a preliminary mapping of patient registries in the member countries of the BeNeLuxA collaboration were presented. As different types of registries exist, key learnings included the need for a clear definition of patient registries and scope in order to determine which type of registry would be appropriate for a potential pilot in the near future. Furthermore, technical and political challenges of a joint registry (e.g. interoperability of datasets, legal framework/collaboration agreements, as well as how necessary information can be collected) were identified.
The BeNeLuxA partners will further explore a collaboration in the field of patient registries.