Invitation DGPharMed webinar series on medical registries

he DGPharMed “Medical Registries” webinar series provides an overview of the current state of the European and national debate. We have invited renowned experts from academia, agencies, and institutions such as the IQWIG and the EMA as speakers. Starting in October 2025, they will share insights into the most important topics related to registries in five exciting webinars.

Whether it’s clinical cancer registries, the German Implant Registry, or the Registry for Cannabis in Oncology – many different medical registries exist in Germany. Medical registries are increasingly important tools for collecting patient data from healthcare. They primarily document disease and treatment courses in hospitals and medical practices. (https://registersuche.bqs.de/search.php)

At EU level, registries and registry-based studies are defined in the “Guideline on Registry-Based Studies.” At national level, there are hardly any regulatory requirements. The German government intends to create the appropriate framework, especially for the use of registry data and its linkage with other patient datasets, but also for the distinction from other forms of data collection and analysis, with a registry law.

The goal is the linkage of national health data with the EHDS, the European Health Data Space. One of the largest projects within the EHDS is DARWIN EU, the “Data Analysis and Real-World Interrogation Network” of the EMA, the European Medicines Agency. DARWIN EU aims to provide practical, real-world insights from across Europe on diseases, patients, treatment courses, including the use of pharmaceuticals. Registry data will be an important source for this.

The DGPharMed HTA Group, together with the associated Registry Working Group, has been involved in these discussions for years; we have initiated an exchange with the EMA, the BfArM, and other relevant stakeholders.