Fig. 1
From: European lipodystrophy registry: background and structure
Data transfer within the ECLip Registry. Figure 1 shows data transfer within the ECLip Registry from the patient to two separate servers localized at Ulm University. The online tool Mainzelliste provides patients pseudonyms whereas the metadata repository is stored at the provider of the IT structure, OSSE. OSSE: Open Source Registry System for Rare Diseases in the EU, PID: unique patient identifier, PNSOSSE: second-level pseudonym