EURO-NMD Board & Working Group Meetings 2020 ONLINE!

10 – 11 July 2020

Our Summer Working Group Meetings and Board Meeting will be held online!

Please note: All times are in CET (Paris time)

Individual agendas and information about each meeting are available below by clicking on the meeting name

Friday 10th July 2020 Disease Working Groups and Cross-cutting Diagnostic Working Groups

Muscle disease work group led by Pr. Marianne de Visser

Agenda

  1. UPDATE ON GUIDELINES (ALL) NEW INITIATIVE: ERN consensus article or ERN position statement regarding e.g. the “diagnostic algorithm for myopathies” (JENS SCHMIDT)
  2. OUTCOME MEASURES IN MYOPATHIES (LORENZO MAGGI)
  3. CPMS USE (MARIANNE DE VISSER)
  4. WEBINARS AND EDUCATIONAL ACTIVITIES – COLLABORATION WITH EAN (MARIANNE DE VISSER)
  5. REGISTRIES (ALL)
  6. INTERACTION WITH PAG (MADELON KROONEMAN) – CLASSIFICATION OF LGMDS (MADELON KROONEMAN)
  7. ANY OTHER BUSINESS
  8. WRAP UP AND ADJOURN

Mitochondrial diseases work group led by Pr. Rita Horvath

Agenda

 12.00-12.10  Introduction – Rita Horvath
 12.10-12.25  EURO-NMD Registry – Hanns Lochmüller
 12.25-12.40  German Mitochondrial Registry – Thomas Klopstock
 12.40-12.55  Italian Mitochondrial Registry – Michelangelo Mancuso
 12.55-13.10  UK Mitochondrial Registry – Bobby McFarland
 13.10-13.25  International Mitochondrial Registry – Holger Prokisch
 13.25-13.50  Discussion – links across registries

Genetics work group led by Pr. Alessandra Ferlini

Agenda

  1. UPDATE ON THE WORK DONE (A.Ferlini)
  2. CPMS USE IMPLEMENTATION : THE ITALIAN PROJECT (F.Fortunato)
  3. GENETIC TESTING WEBINARS: IN PROGRESS (G.Gualandi)
  4. NBS survey (F.Lamy?)
  5. CALL FOR IDEAS ABOUT NEW TOPICS/ISSUES to be carried out within the Genetic Task activity (general discussion) ALL
  6. Closure

Imaging work group led by Pr. Pierre Carlier

Agenda

  1. Imaging cases discussion 60’ – with cases submitted by HCP’s
  2. Imaging methodology 20’ – towards a consensus a) For muscle imaging 20’: facilitated by P. Carlier b) For nerve imaging: 20’: facilitated by O. Scheidegger

Motor neuron diseases work group led by Pr. Leonard van den Berg

Academic Publications

Primary lateral sclerosis: consensus diagnostic criteria

A proposal for new diagnostic criteria for ALS

Agenda

10.00 – 10.30 SMA – Ludo van der Pol Update new therapies, ENMC workshop on adult onset SMA, update on the successful second International SMA Research Congress, any other issues to discuss 10.30 – 10.50 Patient perspectives – Evy Reviers How to connect national Patient organizations in a European Patient organization What is the influence of the Patient in EMA decision making 10.50 – 11.00 Break 11.00 – 11.20 Euro-NMD Registry Hub – Antonio M Atalaia 11.20 – 11.50 ALS – update multidisciplinary care guidelines, new proposed criteria for ALS and PLS, trial readiness, any other issues to discuss

Peripheral nerve diseases work group led by Pr. Davide Pareyson

Agenda

  1. 12.00-12.30 WEBINAR: Dr. Massimiliano Filosto, Brescia – Italy: “GBS and COVID-19”
  2. UPDATE ON GUIDELINES
  3. OUTCOME MEASURES IN NEUROPATHIES
  4. CPMS USE
  5. WEBINARS AND EDUCATIONAL ACTIVITIES
  6. REGISTRIES INTERACTIONS WITH PAGs
  7. PERIODIC MONITORING
  8. AOB

Neurophysiology work group led by Pres. Peter van den Bergh & Camiel Verhamme

Agenda

14:00 – Welcome (C. Verhamme, co-chair) 14:00 – Identification of useful guidelines and consensus statements – C. Verhamme (Amsterdam, Netherlands) and S. Segovia-Kueny (AFM Paris, France) 14:15 – Guillain-Barré syndrome and COVID-19: the French experience – Y. Péréon (Nantes, France) 14:35 – Critical illness neuropathy/myopathy and its Electrodiagnosis – P. Y. K. Van den Bergh (Brussels, Belgium) 15:00 – Reference values in clinical neurophysiology – M. Tannemaat (Leiden, Netherlands) 15:25 – Ultrasound in the diagnosis of peripheral neuropathies – S. Goedee (Utrecht, Netherlands) 15:50 – Closure (P. Y. K. Van den Bergh, co-chair) (speaker times include 5 minutes for discussion)

Neuromuscular Junction defects work group led by Pr. Hanns Lochmüller

Agenda

  1. EURO-NMD registry – overview and defining data items: Hanns Lochmüller
  2. ENMC workshop re paediatric MG/CMS – implementation of guidelines: Jackie Palace
  3. MG antibody testing – status quo and future developments: Isabel Illa (not confirmed)
  4. AOB

Saturday 11th July Educational Board, Patient Advisory Board & Main Board Meeting

Educational Board led by Jean-Philippe Plançon

Patient’s Advisory Board led by François Lamy This meeting is by invitation only.

EURO-NMD Summer Board Meeting 2020

Board meeting led by Dr. Teresinha Evangelista

Board Meeting Agenda

 14.00 – 14.10  1 Welcome & meet the new ERN Team members by Teresinha Evangelista
 14.10 – 14.20  2 Last board meeting’s action points Q&A by Teresinha Evangelista
 14.20 – 14.40  3 Covid-19 survey results, Q&A by Teresinha Evangelista
 14.40 – 15.00  4 Euro-NMD Registries’ hub Q&A by Hanns Lochmüller & Janbernd Kirschner
 15.00 – 15.15  COMFORT BREAK
 15.15 – 15.35  5 Monitoring of the ERN, Q&A by Heike PASCAL
 15.35 – 15.55  6 The new shape of the ERN: New full members, affiliated partners, full members not engaging Q&A by Teresinha Evangelista and Heike Pascal
 15.55 – 16.15  7 Progress in EC’s guidelines project Q&A by Antonio Atalaia
 16.15 – 16.20  8 Farewell by Teresinha Evangelista
 16.20 – 16.30  9 FAREWELL FINALE : The ERN-Euro NMD secretariat has got talent! by Annelies Herman

See you all in Budapest, for real!

Annual ERN Euro-NMD meeting November 18-20th, 2020

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern“