Advocacy for data


At a time when data collection and exploitation are under debate, the EDMUS Foundation has chosen to use them for positive purposes to advance research. Professor Confavreux was convinced that patient data could be a rich source of information for research and thus worked to enable many clinicians and researchers to have access to data from a large population of patients followed over a long period of time. This access has made it possible to carry out studies more accurately and quickly.

However, the EDMUS Foundation makes it a point of honour to secure the data collected and to ensure that all stages of the data's life, from collection to operation, are carried out in compliance with regulations. In particular, the use of data for research purposes is only carried out with the consent of patients and the data is first purged of any directly identifying information relating to patients, in order to protect their privacy.

EDMUS software, a true medical record specialized in the management of patients with multiple sclerosis, allows the collection of data as part of the patient's usual follow-up; we call it observational data. The strength of these data lies in the collection process: by the caregiver and for the patient, in order to allow for quality clinical follow-up of the patient. This does not prevent, in the context of specific projects, the collection of additional data, always with the agreement of patients.

Through epidemiology, statistics, artificial intelligence and all methods of data exploitation, researchers obtain relevant information based on patient data that allows them to draw conclusions about the purpose of their study and thereby improve knowledge and management of multiple sclerosis.



To discover Sandra Vukusic's presentation on data at the ECTRIMS conference 2019, click here.