European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe aiming to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources. The European Commission together with ERNs set up the eHealth Digital Service Infrastructure for ERNs and developed the Clinical Patient Management System (CPMS) as the platform conceived for the secure sharing of clinical data for interprofessional consultation of complex cases.
ERN-EuroBloodNet encompasses more than 450 Rare Hematological Diseases (RHD) which are very heterogeneous in their nature and clinical course e.g. oncological vs non-oncological, acute vs chronic or hereditary vs acquired. Accordingly, customization of CPMS is essential to ensure the efficient use of the platform addressing the RHD needs.
In this context, the call CEF TELECOM CALL FOR PROPOSALS 2018 CEF-TC-2018-4 was granted for the project "Connecting EuroBloodNet II" in order to develop a stepwise approach for the efficient use of CPMS in the context of the ERN-EuroBloodNet and support ERN-EuroBloodNet users in the functioning of the CPMS while implementing the ERN-EuroBloodNet e-learning platform.
The operational helpdesk, besides assisting directly to the users in case that support is needed, has organized several CPMS workshops to train experts. A first model of Task force has been created for Cutaneous lymphoma with the concrete aims to establish regular CPMS video meetings, and develop logistics for timely outcomes delivered to patients. This model should be used for expanding this action on different rare and ultra-rare disease groups and to engage more experts from ERN-EuroBloodNet.
An environment for hosting the ERN-EuroBloodNet e-learning platform has been creating during this project for promoting a free open access tool to knowledge in the field of RHDs for health professionals and patients' community. A very ambitious tool has been developed by the Network for the benefit of RHDs community in Europe. It offers a free accessible repository of cutting-edge educational material fulfilled with validated contents produced by highly qualified experts.
The project "Connecting EuroBloodNet II" has ended successfully on the 30th September, to now expand the actions initiated through "Connecting EuroBloodNet III" (CEF TELECOM), aiming to a) optimize support to involved parties for efficient use of the ERN core service platforms and mandatory data collection validation, b) further develop the repository of knowledge and expertise in the field of rare blood diseases, and enable access to this knowledge cross borders, c) coordinate the improvements of EuroBloodNet's data set to develop diseases-specific customization of the ERN CPMS according to Rare Hematological Diseases needs.