NOMADMUS - French cohort of optical neuromyelitis and related disorders - Romain Marignier, project start: 2017


Neuromyelitis optica (NMO), is a rare but potentially devastating condition. Such as multiple sclerosis (MS), NMO is an inflammatory auto-immune disorder of the central nervous system. Since the end of the past century, NMO was considered as a subtype of MS until the 2004 discovery of a specific antibody, aquaporin4-IgG (AQP4-IgG), which enabled the distinction between these two diseases. Detecting this autoantibody led to the extended concept of NMO spectrum disorders (NMOSD) that encompasses now also patients with auto-antibody against the myelin oligodendrocyte glycoprotein (MOG), and without any autoantibodies (double seronegative). Among other international efforts, the launch in 2009 of a national French cohort on NMO and related disorders, NOMADMUS, led to a quantum leap in NMO knowledge and management.

However, there are still major unmet needs in this ongoing expanded field:

- the assessment of quality of life at large scale;

- the full characterization of the expanded MOG-IgG spectrum disorder;

the characterization of double seronegative patients;

- the precise evaluation of the effect of attack-related therapy;

- the long term evaluation of maintenance therapies, in term of efficacy and tolerability.

The primary objective of the current proposal is to provide further funding to maintain the NOMADMUS cohort. The secondary objectives will focus on the five sub-projects, all nested in the global NOMADMUS structure.

The maintenance of the NOMADMUS cohort will enable to support future national and international projects at the genetic, epidemiological, clinical, imaging and therapeutic levels. This will maintain the position of France and OFSEP as leaders in the field.