Funding transnational collaborative research through joint transnational calls is one of the major objectives of E-Rare. This is the most important and effective joint activity to enhance the cooperation between European scientists working on rare diseases and thus reducing the fragmentation of research in this field. E-Rare launches calls on a yearly basis. The topic and eligibility criteria are specified every year and therefore may vary from one call to the other.

Eugène Devic European Network: establishment and use of an European database and biological bank for research and treatment in acute neuromyelitis optica and related disorders

Project Coordinator

Service de Neurologie A Hopital Neurologique Pierre Wertheimer Groupement Hospitalier Est Lyon Neurosciences


Aksel Siva Department of Neurology Istanbul University Cerrahpasa School of Medicine Istanbul, Turkey
Angela Vincent Nuffoeld department of Clinical Neurosciences The Chancellor, Masters and Scholars of the University of Oxford Oxford, UK
Hans Lassmann Department of Neuroimmunology Center for Brain Research Medical University of Vienna Vienna, Austria
Hans-Peter Hartung Department of Neurology Heinrich-Heine-University Düsseldorf, Germany
Klaus-Peter Wandinger CNS Research & Development EUROIMMUN Medizinische Labordiagnostika AG Lübeck, Germany

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.


E-Rare 2012 - Created by Toussaint Biger