On 11 and 12 June, NAREG took part in this year's Health Registry Summit in Berlin. The event brought together experts from the fields of research, healthcare and registry management to discuss current developments and challenges facing medical registries. The first day of the event focused on the planned Registergesetz. It became clear during the discussions that its success will depend largely on its practical implementation. At the same time, the central importance of medical registries for research, quality of care and evidence-based decision-making was emphasised. Another key focus was on the prerequisites for successful data linkage, in particular the importance of high data quality, a clear legal framework and sufficient resources.
On the second day of the event, the focus was on standardisation, harmonisation and the European perspective on medical registries. In her presentation ‘On a collision course? Consent and legal foundations in the reality of registries’, Svenja Windeck outlined the work of NAREG and highlighted the challenges involved in standardising registry structures. It became clear that legal and ethical requirements must be taken into account right from the design stage of registries in order to enable sustainable and practicable solutions. Topics discussed included the legal basis of NAREG, planned amendments to the Gesundheitsdatennutzungsgesetz (GDNG) for the new Gesetz für Daten und digitale Innovation im Gesundheitswesen (GeDIG) and the ‘broad consent’ approach of the Medical Informatics Initiative (MII), which was also the subject of in-depth discussion during the subsequent panel discussion.
The NAREG team would like to thank the TMF for the successful organisation of the event, as well as all participants for the professional exchange and valuable insights.