E-Health Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 1st eNMD Congress : Nice, France, March 22-23, 2019
Pini, Jonathan (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD)
Siciliano, Gabriele (Neurological Clinic. Department of Clinical and Experimental Medicine. Ospedale Santa Chiara. University of Pisa)
Lahaut, Pauline (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD)
Braun, Serge (AFM Telethon (França))
Segovia-Kueny, Sandrine (AFM Telethon (França))
Kole, Anna (Public Health Policy Director Rare 2030 Lead EURORDIS)
Hérnando, Inés (Healthcare Director EURORDIS)
Selb, Julij (University Clinic Golnik. Golnik. Slovenia -Medical Consultant Parsek)
Schirinzi, Erika (Neurological Clinic. Department of Clinical and Experimental Medicine. Ospedale Santa Chiara. University of Pisa)
Duong, Tina (Department of Neurology Stanford University)
Hogrel, J.Y. (Institut de Myologie (París, França))
Serrano-Olmedo, Jose Javier (Escuela Técnica Superior de Ingenieros de Telecomunicación)
Vissing, John (Copenhagen Neuromuscular Center. Rigshospitalet. University of Copenhagen)
Servais, Laurent (Division of Child Neurology Reference Center for Neuromuscular Disease. Centre Hospitalier Régional de Références des Maladies Neuromusculaires. Department of Paediatrics. University Oxford)
Vincent-Genod, Dominique (L'Escale. Pediatric Rehabilitation Department. Hospices Civils de Lyon)
Vuillerot, Carole (Neuron Interaction Team. NeuroMyogène Institute. Lyon University)
Bannwarth, Sylvie (Institute for Research on Cancer and Aging of Nice (IRCAN). Faculty of Medicine. Université Côte d'Azur (UCA))
Eggenspieler, Damien (Healthcare Program Director. Sysnav)
Vicart, Savine (Channelopahies Reference Center. Service of Neuro-Myology. University Hospital Pitié-Salpêtrière. Assistance Publique-Hôpitaux de Paris)
Diaz-Manera, Jordi (Institut d'Investigació Biomèdica Sant Pau)
Lochmüller, Hanns (Centre de Regulació Genòmica)
Sacconi, Sabrina (Fédération Hospitalo-Universitaire Oncoage. Centre Hospitalier Universitaire de Nice. Université Côte d'Azur (UCA))
Cavalli, Michele (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD)
Puma, Angela (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD)
Villa, Luisa (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD)
Andr, Ezaru (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD)

Fecha:	2021
Resumen:	By definition, neuromuscular diseases are rare and fluctuating in terms of symptoms; patients are often lately diagnosed, do not have enough information to understand their condition and be proactive in their management. Usually, insufficient resources or services are available, leading to patients' social burden. From a medical perspective, the rarity of such diseases leads to the unfamiliarity of the medical staff and caregiver and an absence of consensus in disease assessment, treatment, and management. Innovations have to be developed in response to patients' and physicians' unmet needs. It is vital to improve several aspects of patients' quality of life with a better comprehension of their disease, simplify their management and follow-up, help their caregiver, and reduce the social and economic burden for living with a rare debilitating disease. Database construction regrouping patients' data and symptoms according to specific country registration on data privacy will be critical in establishing a clear consensus on neuromuscular disease treatment. Clinicians also need technological innovations to help them recognize neuromuscular diseases, find the best therapeutic approach based on medical consensus, and tools to follow patients' states regularly. Diagnosis also has to be improved by implementing automated systems to analyze a considerable amount of data, representing a significant step forward to accelerate the diagnosis and the patients' follow up. Further, the development of new tools able to precisely measure specific outcomes reliably is of the matter of importance in clinical trials to assess the efficacy of a newly developed compound. In this context, creation of an expert community is essential to communicate and share ideas. To this end, 97 clinicians, healthcare professionals, researchers, and representatives of private companies from 9 different countries met to discuss the new perspective and challenges to develop and implement innovative tools in the field of neuromuscular diseases.
Nota:	Altres ajuts: ALCOTRA Program (Alpes Latines COopération TRAnsfrontalière).
Derechos:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, sempre que no sigui amb finalitats comercials, i sempre que es reconegui l'autoria de l'obra original.
Lengua:	Anglès
Documento:	Article ; recerca ; Versió publicada
Materia:	E-health ; Enmd congress ; Neuromuscular disease ; Innovation ; Unmet needs
Publicado en:	Journal of Neuromuscular Diseases, Vol. 8 Núm. 4 (2021) , p. 743-754, ISSN 2214-3602

DOI: 10.3233/JND-210655
PMID: 33843694

12 p, 545.3 KB

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