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
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 Porphyria Registry (PoReGer) was founded by four centers with longstanding expertise in the field of porphyrias and rare diseases (Charité-Universitätsmedizin Berlin, Porphyria Center Saxony Chemnitz, University Medical Center Hamburg-Eppendorf, University Medical Center Göttingen) and the German reference laboratory for porphyria, and is supported by the largest German porphyria patient organization...
January 3, 2024: Healthcare (Basel, Switzerland)