E-Health & Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 1st eNMD Congress: Nice, France, March 22-23, 2019.

摘要: By definition, neuromuscular diseases are rare and fluctuating in terms of symptoms; patients often lately diagnosed, do not have enough information to understand their condition be proactive management. Usually, insufficient resources or services available, leading patients' social burden. From a medical perspective, the rarity such leads unfamiliarity staff caregiver an absence consensus disease assessment, treatment, Innovations developed response physicians' unmet needs.It is vital improve several aspects quality life with better comprehension disease, simplify management follow-up, help caregiver, reduce economic burden for living debilitating disease. Database construction regrouping data symptoms according specific country registration on privacy will critical establishing clear treatment.Clinicians also need technological innovations them recognize diseases, find best therapeutic approach based consensus, tools follow states regularly. Diagnosis has improved by implementing automated systems analyze considerable amount data, representing significant step forward accelerate diagnosis up. Further, development new able precisely measure outcomes reliably matter importance clinical trials assess efficacy newly compound.In this context, creation expert community essential communicate share ideas. To end, 97 clinicians, healthcare professionals, researchers, representatives private companies from 9 different countries met discuss perspective challenges develop implement innovative field diseases.Keywords.