Berlin 2024 MEDEN Meeting
The 2024 MEDEN24 Conference was held from May 23 to 25 in Berlin, hosted by Prof. Dr. Friedemann Paul, Dr. Judith Bellmann-Strobl, and Prof. Dr. Frederike C. Oertel (all: Charité – Universitätsmedzin Berlin, Berlin, Germany) in collaboration with the MEDEN Steering Committee.
70 scientists from expert centers in Europe and beyond attended the conference to discuss key research questions in the field of MOGAD (Myelin Oligodendrocyte Glycoprotein Antibody Disease) and NMOSD (Neuromyelitis Optica Spectrum Disorder) research. Apart from scientific sessions on current research, working groups were formed to initiate long-term collaborative projects across all participating centers focusing on 1) setting up a minimal dataset structure across centers as a basis for future research 2) elucidating seronegative disease, 2) laying the foundation for a pregnancy registry and 4) setting up an academic platform for clinical trials in NMOSD and MOGAD. Additionally, twenty young investigators were invited to learn from and contribute to the discussions at the meeting. For the first time, a Young Investigator Price was awarded to further stimulate networking between young investigators and to recognize their promising early contributions to the field.
In conclusion, this conference fostered active researcher exchange, set the basis for collaborative projects and affirmed the ongoing progress in research for the benefit of people with NMOSD and MOGAD.
Hot Topics
Diagnosis: Anatomically limited pheno-types should be included in the sero-negative NMOSD criteria
Pro: J. Palace
Contra: R. Marignier
Pro: S. Mariotto
Contra: P. Schindler
Treatment: A first severe attack in MOGAD is an indication for starting long-term Immunotherapy
Monitoring: GFAP/NfL are useful to monitor disease activity in NMOSD and MOGAD
Pro: G. Arrambide
Contra: M. Juryńczyk
Controversies
Escalation vs. Induction Therapy and in-equality of access to higher potency therapies -- Non trial treatments vs trial treatments
Pro : D. Engels
Contra : V. Camera
Are MOG antibodies pathogenic or just biomarkers?
Pro : Z. Zebec
Contra : M. Trentinaglia
Screening for AQP4 and MOG in case of Optic Neuritis
Pro : C. Rocchi
Contra : M. Huemmert
Working Groups
WG 1
Pregnancy registry
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.
WG 2a
Minimal Dataset
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. You can go to the video to learn more!
WG 2b
Non-MS Demyelinating Conditions
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. You can go to the video to learn more!
WG 3
Academic platform
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.
