Project: The Molecular Basis for Neurodegeneration and Muscle Atrophy in ALS

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; medico-economic 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.

Acronym	ALS-degeneration
Duration	01/01/2013 - 31/12/2015
Project Topic	4th JOINT CALL FOR EUROPEAN RESEARCH PROJECTS ON RARE DISEASES (JTC 2012) (Driven by young investigators)
Network	E-Rare-2
Call	4th Joint Call for European Research Projects on Rare Diseases driven by Young Investigators

Project partner

Number	Name	Role	Country
1	Tel Aviv University	Coordinator	Israel
2	Tel Aviv University	Partner	Israel
3	University Paris 06	Partner	France
4	Max Planck Institue for Heart and Lung Research	Partner	Germany
5	Institut Curie	Partner	France
6	12th October University Hospital	Observer	Spain