Activities in the Network

Virtual Consultation
The ERN-SCF asks the patient (or his or her legal guardian) to provide consent to three types of data sharing:

I. Consent to sharing de-identified data for care purposes.

II. Consent for the inclusion of de-identified data in ERN registries.

III. Consent to be contacted in the context of research initiatives

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare conditions that require highly specialised treatment and a concentration of knowledge and resources. To review a patient’s diagnosis and treatment, ERN convene ‘virtual’ advisory boards of medical specialists across different disciplines, using a dedicated IT platform. Clinical Patient Management System, CPMS, is a secure web-based application that provide tools for virtual consultation and collaboration.
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