Is there an ALS registry in Germany?

There is no nationwide ALS registry. The German Research Foundation (DFG) has funded a local registry for the “Swabia” region, which covers defined areas of the states of Bavaria and Baden-Württemberg. The data is collected and analyzed at the Institute of Epidemiology and the Department of Neurology at the University of Ulm.

In addition, there are regional registries in North Rhine-Westphalia and Rhineland-Palatinate, each organized by ALS centers, which systematically track ALS patients at their respective ALS outpatient clinics. Additional insights are gained from data provided by the “Ambulanzpartner” care and research platform, which does not have the formal status of a registry but tracks more than 20% of all ALS patients in Germany on a supraregional basis. This network is thus the most comprehensive data collection system for ALS in Germany.

Even by international standards, only a few ALS registries have been established to date. The Netherlands is the only country known to have a national registry of all ALS patients. This can be explained by the centralization of the healthcare system and care structures in the Netherlands, as well as that country’s significantly smaller population. With more than 100 statutory health insurance providers, a complex structure in the scientific and healthcare landscape, and the self-governance of medical care, centralization based on the Dutch model is hardly feasible in Germany. In Germany, the opportunity lies in digitizing care processes within internet-based structures, which will make it possible to consolidate patient data in this way.