Patient information and signature of the consent form

Conform to regulations, the CNIL (French data protection authority) demands that patients are informed of the OFSEP project and sign an informed consent form before the collection and transmission of their data for OFSEP project research. Depending on whether the patient is in the active patient population or not (no consultation for more than five years), he can be informed during a consultation or hospital stay and sign the consent form, or be informed by post.

Documents (in French)

Tools (in French)


Collection of minimal data by the neurologist

The clinical group has defined a set of minimal clinical data that all the neurologists participating in the OFSEP project undertake to collect during each patient consultation or hospitalization. These data are mandatory for all patients who have consulted at least once since 15 June 2013. 
To ensure the collection of homogeneous and quality data, it is highly recommended that these data are collected using the paper form entitled "OFSEP minimal form". To adapt to local practice, this OFSEP minimal form exists in two formats: a log book to enable patient follow-up over several years and a two-sided form to be used for each consultation or hospitalization.

Guides (in French)

Documents (in French)


Data input and quality check in EDMUS

After collecting the data, they must be entered in EDMUS. Coherency must be verified directly in EDMUS using the “data checkup” tool.

Guides (in French)


Data export to the National Coordination Center

The data collected in the local EDMUS databases of OFSEP participant centers must be exported on 15 June and 15 December to enable compilation of the common clinical database. For specific studies, additional exports may be requested. The data must be encrypted using the GnuPG software before transmission to the National Coordination Center.

Guides (in French)


Pre-requisites for a center to participate in the OFSEP project: declaration of the EDMUS database to the CNIL

The pre-requisites for a center to participate in the OFSEP project are signature of an agreement by both the center and OFSEP, and declaration of the center's EDMUS database to the CNIL.


Read the FAQ or contact us if you have any further questions.