Improved awareness of existing and planned cohorts and registries is needed. We developed a web-based catalogue that provides this strategic oversight and allows end-users to browse metadata of MS data cohorts and registries. Our first version of the MSDA Catalogue digitalizes the questionnaire used in the most recent European Mapping Exercise. It is hosted by the European Medical Information Framework Catalogue and will be a moderated community besides many other disease specific communities (incl. Alzheimer Disease, Rare Diseases, …). We encourage you to register for the EMIF-catalogue and request access to the MSDA community.

Following data is collected (list is not exhaustive):

• Organisational information (Name, Custodian information, MS society involvement, contact details, funding info)
• Background/Purpose (Start year, purpose, target population, sources of data collection)
• Inclusion criteria (patient inclusion criteria, centre inclusion criteria)
• Documentation Process (who collects data? How? Identity system? Language?)
• List of variables (personal data, basic disease data, relapses, disability, cognition scales, treatments, MRI, Paraclinical measures, Patient-derived measures, depression, fatigue, co-morbidities, socio-economic data, societal services, healthcare utilization)
• Quality control (quality control mechanisms, data coverage, representativeness, trigger data entry)
• Governance (Approval, informed consent, access to data)
• Current state of registry (number of patients, number of visits)