The EURO-DM-CRN is a newly established European collaborative network dedicated to advancing clinical research and care in Myotonic Dystrophies. Inspired by the successful model of the MDCRN in the United States, the EURO-DM-CRN aims to bring together leading clinical centers, harmonize research practices, and facilitate the development of future therapeutic strategies.
The network will serve as a central coordination hub, supporting participating European sites through shared methodologies, common data standards, streamlined project workflows,
and collaborative trial planning.
By fostering closer interaction among clinicians, researchers, and patient organizations, the EURO-DM-CRN seeks to accelerate the generation of high-quality clinical data and to strengthen Europe’s contribution to global research efforts in Myotonic Dystrophy.
As the field rapidly evolves and novel therapeutic approaches emerge, the EURO-DM-CRN is committed to ensuring that European centers are aligned, prepared, and equipped to support upcoming research initiatives and clinical studies.
To support the establishment of the network, all interested centers are invited to complete the EURO-DM-CRN Feasibility / Site
Readiness Form.
The form allows each site to provide essential information regarding patient numbers, available equipment, local resources, and
operational capacity. These data will help the Scientific Coordinators identify participating sites, ensure readiness to collect the core
dataset, and plan future studies in a harmonized and inclusive way.
Full Professor of Neurology– Clinical Scientific Director NeuroMuscular Omnicentre (NEMO)
Milan – ITALY
Friedrich Baur Institute – Neurology Clinic and Outpatient Department LMU University Hospital – Ludwig Maximilian
University of Munich Munich – GERMANY
Associate Professor, Neurology Institute of Myology
– Hôpital Pitié-Salpêtrière
Paris – FRANCE
Professor and Vice Chair of Research Director, Center for Inherited Myology Research (CIMR) Armas Family Chair Virginia Commonwealth University Richmond,
Virginia, USA
Organising secretariat
LENA CORPORATION SAM – Lena Group
74 Boulevard d’Italie 98000, Monaco
+377 97 97 35 55