E-Health & Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 3rd eNMD Congress: Pisa, Italy, 29

E-Health & Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 3rd eNMD Congress: Pisa, Italy, 29–30 October 2021

Published:2024-05-08 Issue: Volume: Page:1-9
ISSN:2214-3599
Container-title:Journal of Neuromuscular Diseases
language:
Short-container-title:JND

Author:

Schirinzi Erika¹, ,Bochicchio Mario Alessandro²,Lochmüller Hanns³,Vissing John⁴,Jordie-Diaz-Manerae ⁵⁶⁷,Evangelista Teresinha⁸⁹¹⁰,Plançon Jean-Philippe¹¹,Fanucci Luca¹²,Marini Marco¹²,Tonacci Alessandro¹³,Mancuso Michelangelo¹,Segovia-Kueny Sandrine¹⁴,Toscano Antonio¹⁵,Angelini Corrado¹⁶,Schoser Benedikt¹⁷,Sacconi Sabrina¹⁸,Siciliano Gabriele¹

Affiliation:

1. Department of Clinical and Experimental Medicine, Neurological Clinic, University of Pisa, Pisa, Italy

2. Department of Computer Science, University of Bari Aldo Moro, Bari, Italy

3. Department of Medicine, Children’s Hospital of Eastern Ontario Research Institute, Division of Neurology, The Ottawa Hospital, and Brain and Mind Research Institute, University of Ottawa, Ottawa, Canada

4. Copenhagen Neuromuscular Center, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

5. The John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK

6. Neurology Department, Neuromuscular Disorders Unit, Hospital de la Santa Creu I Sant Pau, Barcelona, Spain

7. Centro de Investigación Biomédica en Red en Enfermedades Raras (CIBERER), Madrid, Spain

8. AP-HP, H. Pitié-Salpêtrière, Institut de Myologie, Unité de Morphologie Neuromusculaire, Paris, France

9. AP-HP, H. Pitié-Salpêtrière, Centre de référence des maladies neuromusculaires Nord/Est/Ile de France, Paris, France

10. Sorbonne Université, INSERM, Institut de Myologie, Centre de Recherche en Myologie, France

11. European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN) and EURO-NMD Educational board, Paris, France

12. Department of Information Engineering, University of Pisa, Pisa, Italy

13. Institute of Clinical Physiology, National Research Council - CNR, Pisa, Italy

14. AFM Telethon, Paris, France

15. Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy

16. Department Neurosciences, Padova University School of Medicine, Padova, Italy

17. Department of Neurology, Ludwig-Maximilians-University Munich, Munich, Germany

18. Peripheral Nervous System and Muscle Department, Université Cúte d’Azur (UCA), Centre Hospitalier Universitaire de Nice, Rare Neuromuscular Disease Reference Center, ERN-Euro-NMD, Nice, France

Abstract

Neuromuscular diseases (NMDs), in their phenotypic heterogeneity, share quite invariably common issues that involve several clinical and socio-economical aspects, needing a deep critical analysis to develop better management strategies. From diagnosis to treatment and follow-up, the development of technological solutions can improve the detection of several critical aspects related to the diseases, addressing both the met and unmet needs of clinicians and patients. Among several aspects of the digital transformation of health and care, this congress expands what has been learned from previous congresses editions on applicability and usefulness of technological solutions in NMDs. In particular the focus on new solutions for remote monitoring provide valuable insights to increase disease-specific knowledge and trigger prompt decision-making. In doing that, several perspectives from different areas of expertise were shared and discussed, pointing out strengths and weaknesses on the current state of the art on topic, suggesting new research lines to advance technology in this specific clinical field.

Publisher

IOS Press

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