Our
Projects

The overall aim is to further improve our understanding of demographic, clinical, radiological and treatment characteristics by providing the first collation and description of the MEDEN NMOSD and MOGAD European patient cohort. Moreover, we aim to better understand patient prognosis by analysing  outcomes (relapse, EDSS and visual acuity) in relation to relapse and maintenance treatments. In addition, considering the 2025 revision of the NMOSD diagnostic criteria, the collated dataset will aid us to assess the new criteria and their effect on cohort selection. We will also evaluate the 2023 MOGAD diagnostic criteria. To harmonize the clinical data already collected by each national registry, so to define a common European data model specific to MOGAD/NMOSD projects both on adult and pediatric population, a common data model (CDM) will be created, it will include all the set of common data elements for rare diseases registration.

Our WG aim is to explore the potential of novel biomarkers, identified in the fluids (serum, CSF, other, using high sensitive assays, immunohistochemistry on rat brain sections, immunofluorescence staining in brain organoids, and neuronal and astrocytic cultures) or by imaging techniques (conventional and non-conventional magnetic resonance imaging, OCT, PET) in improving the differential diagnosis, monitoring and response to treatment in NMOSD and MOGAD. An important aspect of this work is to understand the structure of AQP4- and MOG-IgG double-antibody-negative NMOSD cohort and its relationship to other CNS inflammatory disorders.

Our group is focused on developing a platform to promote research on currently open questions on the treatment and management of people with NMOSD and MOGAD, aligned with patients’ priorities. We aim to develop standard operating procedures and a framework to facilitate clinical trials in these rare disorders and to find innovative solutions, including new flexible designs, that will promote recruitment and maximization of resources.  We are currently working on developing outcomes that integrate efficacy and safety to compare old and new drugs for the treatment of Aquaporin-4 NMOSD and on developing a trial design which could be used for acute relapse treatment trials.

The pregnancy working group developed a minimal dataset concerning pregnancy related variables with the aim to easier link different registries and compare outcomes of pregnancies of women with NMOSD or MOGAD.

We are working on a group looking specifically into the pediatric side of MOGAD and NMOSD, come back later to see our progress!