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Fig. 4 | Orphanet Journal of Rare Diseases

Fig. 4

From: Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER

Fig. 4

International registry data protection structure. We present the digital structure of the international registry, which will be used for outcome monitoring of quality aims and research questions. Each participating centre will retain ownership of the data. All data is uploaded pseudonymized. Privacy is secured according to German laws and guidelines, thus the system can be used Europe-wide. The versatile user-interface of the registry will run on Castor EDC (CIWIT B.V., Amsterdam, the Netherlands)

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172