Participation
Multiple sclerosis (MS) is a chronic disease of young adults affecting approximately 15’000 patients in Switzerland.
The key aims of the SMSC are:
(1) To maintain a long-term cohort (>20 years) of deeply phenotyped persons with MS (pwMS) living in Switzerland. This requires effective measures to limit drop-outs and the continuous recruitment of pwMS and
(2) To conduct a systematic follow-up with standardized, high-quality collection of clinical (in future also digital) and magnetic resonance imaging (MRI) data, as well as body fluids.
The significant heterogeneity within the diagnostic entity and phenotype of MS is not entirely understood. A central and necessary prerequisite of further advance is a sufficient amount of high quality clinical and paraclinical (imaging, body fluids) patient data.
Nested projects are addressing specific research topics, and facilitate national and international collaboration.
The nested projects focus on:
(1) Development and validation of diagnostic and prognostic markers of spontaneous disease evolution and therapeutic response.
(2) Exploration of the safety and impact on long-term disability of existing and next generation MS treatments
(3) Individualized therapy: A number of highly active but potentially also harmful therapies have been established for the treatment of MS. To date, due to the lack of individual prognostic markers patients may not receive aggressive therapy due to safety concerns, or patients with benign disease may receive expensive and potentially harmful treatments without the need for it.
Participants need to be diagnosed with a radiologically isolated syndrome, clinically isolated syndrome or MS. Patients with a neuromyelitis optica spectrum disease (NMOSD) or anti-MOG disease (MOGAD) are also followed in the SMSC.
Additional key inclusion criteria are:
– modifying treatment (DMT) at recruitment, or
– the need to begin or switch a DMT, or
– starting or switching a DMT – willingness to attend the hospital every 6 months or 12 months (with a facultative cranial MRI every 12-months) over a longer period, including donation of a small amount of blood for biobanking.
Once pwMS are included in the SMSC they are followed as part of their routine care clinically and by imaging (brain MRI scan once a year); in addition, blood (serum, plasma, whole blood) and if available cerebrospinal fluid samples are stored in local repositories available for nested projects.
Participation is possible in SMSC centres via the treating neurologists.