EURO-NMD Patient Advisory Board (PAB) has published a position paper which describes patients’ views on the design of the EURO-NMD registry, its governance, its funding. The paper, which is available to download, formalises patients’ views on the topic ahead of the call for dedicated ERN registries.
Patients’ data registries in Europe in the neuromuscular field followed the spectacular progress of medicine over the past decades.
Due to the high number and heterogeneity of diseases, the variety of collected data types and the various national policies in the domain we observe today a multiplicity of initiatives drawing a highly uneven picture throughout the continent and among diseases.