The EDMUS network:
A moral commitment and an ethical framework
When acquiring the software, the user has at his/her disposal a tool to store and use data from his/her own multiple sclerosis patients.
He may, if he/she so desires, choose to collaborate with other users within specific studies. When doing so, he/she adheres to the principles of the EDMUS By-Laws, ratified on the occasion of the second General Assembly of the EDMUS European Concerted Action on October 27, 1995. Thus, he/she becomes part of the EDMUS network.
- DMUS is a clinical database system conceived within the first European Concerted Action on MS. It is the result of joined reflexions by clinicians and researchers from the whole European Union, all involved in multiple sclerosis, who make up the EDMUS Steering Committee.
- EDMUS is a working tool available for the clinicians and the researchers involved in MS, for medical, scientific and academic purposes. The main objective is to strengthen the fight against MS with a policy of scientific independence and objectivity.
- The different activities pertaining to the system's conception and circulation are carried out under the supervision of the EDMUS Steering Committee and the responsibility of the EDMUS Coordinating center.
The system is circulated through direct contact between the EDMUS Coordinating Center in Lyon
and the user. This allows:
- to weave a strong network between the users,
- to foster international multicentre collaborative studies,
- the EDMUS Coordinating Center to be informed directly of any problem when running the system, and of any wish expressed by the user to modify or develop the system.
The EDMUS Coordinating Center has the necessary skilled staff in computer science, epidemiology and
statistics to carry out its missions:
- definition, programming and circulation of the software,
- coordination of international multicentre studies,
- statistical analysis.
- EDMUS is a non profit organisation matching the activities of the European MS Platform, which gathers the National Societies against MS in Europe, and those of the Multiple Sclerosis International Federation (MSIF).
During the same General Assembly, a Code of behaviour was adopted, in order to respect the interests and rights of the patients, the users and other interested parties. The main points are the following:
- Clinical data which have been registered in the EDMUS system are the property of the original physician/department.
- When clinical data are sent to the EDMUS Coordinating Center, they remain the property of the donor (owner), who delegates co-ownership of the data to the ECC. This delegation can be withdrawn at any time. The use of these data by the Center is limited to the research project for which they were entrusted.
- All clinical data entrusted to the Center are anonymized, in order to respect the privacy and confidentiality owed to any person.
- A written request to the EDMUS Coordinating Center is needed to obtain data; the study project for which data are requested should be clearly stated.
- For each project, the applicant needs previous written authorization from each owner (original physician/department). Data are anonymized. The lack of authorization prevents data delivery.
- For each study project, data are delivered, that are to be used only in that project. In case of a new study not previously mentioned, a new written authorization should be requested from the Center.
- Data obtained for a given project will never be distributed to third parties without the Center's authorization.
- The transferee expressly agrees to take into account the contribution of the original owners and of the EDMUS Coordination Center in the final publications. This point must be mentioned in the cession contract.
Relationship with patients
Relationship among researchers