At a time when innovative therapies are being developed for refractory forms of autoimmune myasthenia gravis, the idea of setting up a European register is gaining ground:
- to this end, a group of experts comprising 11 neurologists, 4 neuropaediatricians and a physiotherapist was brought together to define the most relevant items for the future register,
- 11 European countries were represented, some of which already have national registers for autoimmune myasthenia,
- at the same time, two groups made up of six patient representatives and four from the pharmaceutical industry were formed and consulted,
- using the Delphi method, the experts selected 62 items (21 of which are compulsory) out of the 100 initially proposed.
The register is aimed primarily at severe forms of the disease.
