Registry debate: "We are building data infrastructure, not research infrastructure"

▤ Summary

This article covers Germany’s Medical Register Act and the debate around how medical registries should be structured, governed, and financed. Officials defend the bill as a milestone for a more unified register landscape, while researchers push for stronger support for research use, data quality, and long-term funding. The discussion also centers on a common identifier for linking data, privacy safeguards, and the mechanics of a decentralized pseudonymization approach. Register operators want a clearer path to sustainable operations, since many still rely on project funding and donations. The debate now moves into the next legislative phase, with unresolved questions around implementation and financing.

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