The EDMUS (European Database for MUltiple Sclerosis) software is a computerized medical file to enable the clinician to record and use the clinical data of his MS patients for medical purposes. It is designed to facilitate the routine work of the neurologist, who can enter only essential data or full details of his patients' medical follow-up, as he wishes. Each center in the OFSEP project has an EDMUS database.
The EDMUS software belongs to the Eugène Devic EDMUS foundation.
The platform Shanoir (Sharing NeurOImaging Resources) is an open source software solution offering secure web access to structure, manage, archive and share neuroimaging data. The ShanoirUploader application enables communication, within a hospital, with the Picture Archiving and Communication System (PACS) to facilitate the transfer of anonymized MRI examinations to the Shanoir platform.
Shanoir was developed by the VisAGeS research team (manager: Christian Barillot), belonging to IRISA (IT and random systems research institute), affiliated to Inria Rennes – Bretagne Atlantique and INSERM.
The TK® open source, biological sample management software is used by many French BRCs (biological resource centers).
The biological samples (serum, plasma, urine, etc.) in the OFSEP biological collection are kept in one of the OFSEP participant centers, but the anonymized data concerning these samples are compiled in a single TumoroteK database, thus representing a virtual BRC.
TK® is developed by Saint-Louis hospital in Paris.
Twice a year, data respecting patient confidentiality rules are exported from the EDMUS databases to the OFSEP National Coordination Center. Similarly, data from the Shanoir platform and from the TumoroteK database are also exported to the OFSEP coordination center.
The compilation of all these data represents the OFSEP common database. This database offers the following possibilities:
- Evaluation of the feasibility of research projects by identifying patient groups according to specific characteristics
- Internal data extraction and statistical analysis for OFSEP or external project holders in order to answer research questions
- In some particular cases, data extraction to be provided to research teams
Extraction and analysis of data are possible only after approval by the Scientific Board and Steering Committee.
The future national platform
A secure national platform will, in the future, enable real time association of the clinical data collected via EDMUS, the MRIs stored in Shanoir and monitoring data of the centralized sample stocks in TK®. This platform aims to facilitate clinical research (better management of double entries, easier multi-criteria searches, etc.) and to improve the routine follow-up of patients by offering neurologists easy access to their patients' information no matter where or when the data were collected. This platform is currently in the design stage.