COVID-19 AND NEUROMUSCULAR DISEASES

The development of e-health technologies for teleconsultation and exchange knowledge is within the mission European Reference Networks (ERN), including Euro-NMD, ERN rare neuromuscular diseases. Clinical Patient Management System (CPMS) a web-based platform promoting active collaboration across ERNs to discuss patient cases. “Telegenetics” represents an attractive alternative traditional on-site genetic counseling in light non-homogeneous availability services among countries increasing demand high-level expertise. To improve use CPMS Euro-NMD Italian members, training course, leaded by two medical doctors, was organized through theoretical practical virtual lessons, addressing different applications functions. Panels were created share complex Telegenetic counselling offered adult cardiac patients pilot project, called “TeleNEwCARe”. Dedicated questionnaires conceived order assess satisfaction. Regarding results: 13 HCPs joined course 87 panels discussion opened; total 65 enrolled telegenetic during first 12 months project collected. effective implementing use, maximizing data sharing care providers, trough discussion. Preliminary from TeleNEwCARe show that remote meets approval patients, allowing confidential relationship with clinicians information.