European experts met in conclave at the European Neuromuscular Center (ENMC) to define standards for the identification and management of patients with autoimmune myasthenia gravis.
- The ten patient registries currently in use or under development were analysed and compared, with expectations and objectives varying depending on the point of view (that of clinicians, patient associations, regulators and manufacturers).
- In addition, an update was given on digital tools such as Myalink, ME&MG and LumiiMG, which are now available to myasthenic patients themselves as well as to clinicians.
The need to harmonise registry items was emphasised by the experts.
