Our
Projects

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.

The common dataset project is aimed at identifying a minimal dataset all centres will collect (at their own centre, country or local collaborative networks) using the same outcomes. This will produce a core that can be collated across MEDEN sites rather than stored centrally, and then built upon in a modular fashion to collect optional additional data including pregnancy data, seronegative data, imaging and OCT data, biomarkers, and treatment outcomes. 

This working group focuses on the clinical, radiological and biomarker characterization of seronegative NMOSD. Our aim is to elucidate the structure of the double antibody-negative cohort by creating a comprehensive clinico-radiological score to help classify these challenging patients, define their biomarker profile of axonal and glial damage, and seek novel antibody targets. 

To develop the academic platform for treatment trials in NMOSD and MOGAD MEDEN working group was established to set up priorities for research trials  create SOPs and a framework to facilitate clinical trials and to find innovative solutions for the treatment of these rare conditions. The group also aims to prioritize questions that are most important for patient care not for commercial reasons, but will contribute to the development of trials for any relevant treatments in NMOSD and MOGAD, and to propose flexible designs to maximize patient recruitment and the use of existing data.