The personal data that you entrust to the Assistance Publique – Hôpitaux de Paris (AP-HP) when you come for consultation or hospitalization are recorded and stored in the AP-HP information system. The data is used to create and maintain your medical file, to administratively manage your care, to organize and manage the care services and your care pathway.
On this occasion, these pseudonymized data (first and last names are not included) are processed by the teams of the rare diseases reference centers (CRMR) and transmitted to the national database of rare diseases (BNDMR). This health data storage will notably enable the implementation of studies that may generate new knowledge on rare diseases, professional practices or the feasibility of clinical trials.
In accordance with the law, you may exercise your right to object to the collection of your data by contacting the APHP data protection officer :