Devic’s neuromyelitis optica (DNMO) is a rare demyelinating and inflammatory disease of the central nervous system with recurrent attacks of optic neuritis, myelitis or both, characterized by a high rate of morbidity and mortality when not diagnosed promptly and treated appropriately. DNMO is now considered to be an auto-immune disease, mediated by a specific serum autoantibody directed against AQP4. However, DNMO patients are still often misdiagnosed for multiple sclerosis. Moreover, there are still many unresolved issues and unmet needs in DNMO: unknown ethiology and pathophysiology; clinical spectrum of the disease; biomarkers; prognostic markers; standardization of treatments; medicoeconomic cost. Thus, EDEN aims at:
•Set-up a European database for DNMO to describe the demographic, clinical, radiological and biological
features and the clinical course with and without specific treatments.
•Create standardised biobanks for DNMO for biomarkers and pathophysiology studies
•Set up European gold standard for AQP4 Ab detection, develop prognostic tests and research for new biomarkers
•Develop and validate models for DNMO
•Propose standardised therapeutic procedures to improve management of patients
•Disseminate procedures to improve communication to patients and clinicians
EDEN, through a systematic longitudinal follow-up collection of data for multimodal assessments of patients will contribute to a comprehensive and homogeneous description of DNMO, standardise medical practice and bring new insights on physiopathology, paving the way to future clinical trials.