German Porphyria Registry (PoReGer)–Background and Setup

German Porphyria Registry (PoReGer)–Background and Setup

Porphyrias, as most rare diseases, are characterized by complexity and scarcity of knowledge. A national registry in one of the largest European populations that prospectively collects longitudinal clinical and laboratory data are an important and effective tool to close this gap. The German Porphyr...

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Bibliographic Details
Main Authors: Lea Gerischer, Mona Mainert, Nils Wohmann, Ilja Kubisch, Ulrich Stölzel, Thomas Stauch, Sabine von Wegerer, Fabian Braun, Christina Weiler-Normann, Sabine Blaschke, Jorge Frank, Rajan Somasundaram, Eva Diehl-Wiesenecker
Format: Article
Language:English
Published: MDPI AG 2024-01-01
Series:Healthcare
Subjects:
porphyria
acute porphyrias
rare disease registry
epidemiology
Online Access:https://www.mdpi.com/2227-9032/12/1/111

Internet

https://www.mdpi.com/2227-9032/12/1/111

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