PAB Position Letter – Call for Proposal on Registries Dedicated to ERNs

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.

The present letter intends to summarize patients’ remarks, prerequisites, and visions on how the EURO-NMD network should positively respond to the call with the ambition for the EURO NMD Registry Hub to be a model for other RDs.