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
- UPDATE ON GUIDELINES (ALL)
NEW INITIATIVE: ERN consensus article or ERN position statement regarding e.g. the “diagnostic algorithm for myopathies” (JENS SCHMIDT) - OUTCOME MEASURES IN MYOPATHIES (LORENZO MAGGI)
- CPMS USE (MARIANNE DE VISSER)
- WEBINARS AND EDUCATIONAL ACTIVITIES – COLLABORATION WITH EAN (MARIANNE DE VISSER)
- REGISTRIES (ALL)
- INTERACTION WITH PAG (MADELON KROONEMAN)
– CLASSIFICATION OF LGMDS (MADELON KROONEMAN) - ANY OTHER BUSINESS
- 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
- UPDATE ON THE WORK DONE (A.Ferlini)
- CPMS USE IMPLEMENTATION : THE ITALIAN PROJECT (F.Fortunato)
- GENETIC TESTING WEBINARS: IN PROGRESS (G.Gualandi)
- NBS survey (F.Lamy?)
- CALL FOR IDEAS ABOUT NEW TOPICS/ISSUES to be carried out within the Genetic Task activity (general discussion) ALL
- Closure
Imaging work group
led by Pr. Pierre Carlier
Agenda
- Imaging cases discussion 60’ – with cases submitted by HCP’s
- 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
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
- 12.00-12.30
WEBINAR:
Dr. Massimiliano Filosto, Brescia – Italy: “GBS and COVID-19” - UPDATE ON GUIDELINES
- OUTCOME MEASURES IN NEUROPATHIES
- CPMS USE
- WEBINARS AND EDUCATIONAL ACTIVITIES
- REGISTRIES
INTERACTIONS WITH PAGs - PERIODIC MONITORING
- 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
- EURO-NMD registry – overview and defining data items: Hanns Lochmüller
- ENMC workshop re paediatric MG/CMS – implementation of guidelines: Jackie Palace
- MG antibody testing – status quo and future developments: Isabel Illa (not confirmed)
- 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
