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 through the development of the Clinical Patient Management System (CPMS), an innovative software that allows virtual discussions over challenging clinical cases between European specialists, in order to help the diagnostic or treatment of these cases. 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 a 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, and by the waiting time for multidisciplinary clinical advice (i.e. panel closure) for non-urgent cases.