lesson from COVID waiting for 2021 e-NMD congress in Pisa

A point and wrap momentum

30-31 October 2020

Dear Colleagues, Dear Friends,

after the slow motion game of the isolation due to Covid-19 pandemia, where our practice has been noticeably upset, everyone has had, between widely spaced appointments, some time to reflect: “the future is cloudy and uncertain… surely the way we practice medicine is going to change, and for a long while…”: who has never thought this? … Sure, “panta rei”, cogitate Eraclito (5th Century BC) so long ago by now, and the spirit of the scientist can only be animated by the call of challenges. The aim to outline innovative solutions in diagnosis, treatment and care of the patient with a neuromuscular disease has been and, even more so now, continues to be an important milestone along the road to improve management of these diseases.

It is time to come back after cancellation of the original e-NMD 2020 Congress that had to be held in Pisa, 20-21 march 2020., to “gather a momentum” for wishing you to share knowledge and new ideas, with the perspective to hopefully organize a live event next year, 2021.
It is in this view that we propose our missed appointment in a new dress, with the hope that this concise meeting could represent a useful opportunity to realize what has been changed for Covid pandemia but, at the same time, what this has given us to be learned for the future. Point and wrap!

Under the auspices of: AIM, ASNP, ERN Euro-NMD, EAN, RD-Connect, Eurordis, EJPRD, Telethon-I, AFM-Telethon NMDs Patient Charities and Associations, UniPI, Ministry pf Health

Scientific Committee

Gabriele Siciliano (IT)
Sabrina Sacconi (FR)
John Vissing (DK)

e-NMD 2020

E-Health & Innovation to overcome barriers in Neuromuscular Diseases


Scientific Committee

Gabriele Siciliano, (IT)
Sabrina Sacconi (FR)
John Vissing (DK)


Advisory Scientific Committee

Corrado Angelini (IT)
Teresinha Evangelista (FR)
Hans Lochmuller (CA)
Jordie Diaz-Manera (ES)
Benedikt Schoser (DE)
Sandrine Segovia-Kueny (FR)
Domenica Taruscio (IT)
Antonio Toscano (IT)


Local Organizing Committee

Giulia Ricci
Erika Schirinzi
Costanza Simoncini
Michelangelo Mancuso


Preliminary program

09:00 – 09:15
Live Greetings and introduction
(G. Siciliano, ITA; S. Sacconi, FR, M. Marra, ITA)

09:15 – 09:45
Lecture 1 – Introducing: G. Siciliano (ITA)
Covid in review: featuring e-Health for the management of quarantine
(D. Pedreschi, ITA)

09:45 – 11:35
Interactive session 1
“Everything’s got a moral, if only you can find it”: Hints for Diagnosis in Neuromuscular disorders
Chairs: G. Siciliano(ITA), T. Evangelista (FRA)

• 09.45 – 10.05 Big data for biological system: the lesson from Covid-19 pandemia (H. Lochmuller, CA, E)

• 10.05 – 10.25 Concept, set up and application of disease registry: ERN experience (Peter-Bram’t Hoen, NL)

• 10.25 – 10.45 Digital imaging biomarkers in neuromuscular disorders
(D. Bendahan, FR)

• 10.45 – 11.05 Home Telemonitoring of Covid-19 patients: the experience of the Tel.Tec.CoViD19 project of the North-West Tuscany ASL
(L. Fanucci, ITA)

• 11.05 – 11.15 Discussion

11.15 – 12.05 Break with virtual Meetings with Experts – Meet the Experts on NMD Diseases (SMA, Duchenne, Amyoloidosis, Pompe, Myasthenic Syndromes): Diagnosis and treatment
Chairs: F. Montagnese, Ripellino, F. Santorelli

12.05 – 13.35 INTERACTIVE SESSION 2Challenges for clinical trials Chairs: (T. Mongini, ITA; S. Sacconi, FR)

• 12.05 – 12.25 Before and after tomorrow: how Covid pandemia renews the need of outcome measures in NMD (J-P Plancon. FR)

• 12.25 – 12.45 Wearable devices and sensors to improve monitoring and data collection: power and pitfalls (L. Billeci, ITA)

• 12.45 – 13.05 Optimizing data output from 6MWT (J. Vissing, DK)


• 13.05 – 13.25 – Succesfull clinical trial in NMD: what can we learn from telemedicine (B. Schoser, DE)

• 13.25 – 13.35 Discussion

13.35 – 14.35 – Break

14.35 – 15.05 Lecture 2:
(introducing: A. Toscano, ITA)
Tele-Health: repurposing challenges to improve the neuromuscular disease care: what we learnt from lock-down.
(E.P. Scilingo, ITA)

15.05 – 15.15 Questions, answers, sessions remarks
(chair V. Sansone, ITA)

15.15 – 16.15 Virtual Meetings with Experts
Meet the Experts on NMD Diseases (SMA, Duchenne, Amyoloidosis, Pompe, Myasthenic Syndromes): Diagnosis and treatment
Chairs: F. Montagnese, Ripellino, F. Santorelli

• 15.15-15.35 – second meeting

• 15.35-15.55 – third meeting

• 15.55-16.15 – forth meeting


Possibility to organize further meetings or Satellite Symposiums after the virtual conference

09.00 Lecture 3 (introducing C. Angelini, ITA)
Functional priorities and patient oriented outcomes: the add value for clinical research (S. Segovia-Kueny, FR)

09.30 INTERACTIVE SESSION 3: Restorative hints for the post-Covid restarting: how to design the fit (chairs: E.Pegoraro, ITA; P. Santantonio, ITA)

• 09.30 – 09.50 Evolving the priorities for assistive robotics in NMD: clinical perspective in post-Covid era (A. Frisoli, ITA)

• 09.50 – 10.10 – Digital biomarker platform for NMDs
(M. Annoussamy, FRA)

• 10.10 – 10.30 Muscle remodelling after lock-down: is it irreversible or not? (C. Chisari, ITA)

• 10.30 – 10.50 Artificial intelligence to redefine clinical caring: a perspective view (J.Diaz-Manera, UK)

• 10.50 – 11.00 Discussion

11.00 – 11.15  Break

11.15 – 12.00 Round table: frontline reports of emergent critical issues after Covid: perspective strategies for their management
(chairs: L. Ouillade, FR; D. Taruscio, ITA)

Introduction: Overview on clinicians perception of consequences of COVID-19 outbreak on neuromuscular diseases in Europe (S. Sacconi, FR)

12.00 – 12.20: Conclusive remarks

Addressed to:

Neurologists, Physiatrists and Physiotherapists. Myopathologists, Neuroradiologists, BioEngineers, Molecular Biologists, BioInformatics, Bio and Pharmaceutical Technology Researchers


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