ENMC workshop nr. 245 on Euro-NMD Pathology, 7 December 2018, WTC Amsterdam Schiphol, The Netherlands
B. Udd (Finland) W. Stenzel (Germany) A. Oldfors (Sweden)
Participants: N. Romero (France), M. Marra (Italy), C. Sewry (UK), T. Evangelista (France), M. Lammens (Belgium) and B. Küsters (The Netherlands)
Translations of this report:
German by W. Stenzel
Finnish by B. Udd
Swedish by A. Oldfors
Portugese by T. Evangelista
Spanish by N. Romero
Dutch by M. Lammens
All neuromuscular diseases are defined as rare diseases and many of them are very difficult to diagnose and treat. EURO-NMD is a newly established network of European Reference Centers which provides access to expert consultations on diagnostics and care for patients with undetermined neuromuscular diseases. The pathology working group of the EURO-NMD with 5 expert members, one patient representative, and 4 additional muscle pathology experts from Germany, UK, France, Finland, Sweden, Italy, Spain, Belgium and the Netherlands, took part in a one day meeting in Amsterdam on December 7th 2018 hosted by the ENMC. The purpose of the meeting was to finalize a EURO-NMD document on ’Recommended Standards’ for muscle biopsy techniques and methods to be applied in all pathology laboratories in the 61 EURO-NMD reference centers.
A survey of current practices in all centers was carried out in 2017 and based on the responses a need to harmonize muscle pathology methods in Europe was evident. The pathology working group prepared a draft for such Recommended Standards in Sept 2018 and the feedback from participating centers on the circulated draft was analyzed and discussed. The meeting resulted in a final version on the: ‘Recommended Standards for muscle pathology’, which will be published later as a meeting report in the Neuromuscular Disorders journal.