The leadership of the Registry is carried out by the steering committee, composed of representatives from the NIHDI, WIV-ISP and experts from each NMRC. A national legal and consent framework was established to bind the partners in the project. Simultaneously a request for secondary use of data from patient health records was sent to the privacy commission of the sectorial health committee dealing with data protection issues and privacy enhancing techniques. The study protocol was accepted by the ethics committee of the Cliniques Universaitaires de St Luc.
The scientific committee gives guidance in the scientific questions such as the results of the data gathered. It is composed of WIV-ISP, experts from each NMRC and representatives of the two patient organizations ABMM and NEMA.