Workgroup Chair
Dr Sofia Douzgou
(Bergen, Norway)
Key Objectives
This Workpackage will aim to improve access to high specialty, direct healthcare for rare malformation and intellectual disability syndromes throughout the EU through the innovative use of technology, in particular by developing the Clinical Patient Management System (CPMS) and piloting the use of Virtual Clinics. To meet its broad objectives, ITHACA aims to capitalize on the network’s composition and range of expertise to set up cross-border knowledge sharing and secure multidisciplinary patient consultations and care.
CPMS is the secure, GDPR (General Data Protection Regulation)-compliant clinical exchange platform of the ERNs. CPMS is web-based and cross-platform accessible for end users. It can be used as a repository of cases, helping to build a collection of pseudonymised patient data for further clinical/epidemiological studies.
Efficient use of CPMS will be evaluated by the number of patients entered into CPMS and reviewed by an expert panel of the ERN (case review), and the waiting time for multidisciplinary clinical advice (i.e. panel closure) for non-urgent cases.