How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system

About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being deve...

Source: Orphanet Journal of Rare Diseases - May 1, 2021 Category: Internal Medicine Authors: Alexandra Berger, Anne-Kathrin Rustemeier, Jens G öbel, Dennis Kadioglu, Vanessa Britz, Katharina Schubert, Klaus Mohnike, Holger Storf and Thomas O. F. Wagner Tags: Research Source Type: research