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 heterogenous 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 2017 CEF-TC-2017-2 was granded for the project "Connecting EuroBloodNet" in order to establish ERN-EuroBloodNet Operational Helpdesk to support ERN-EuroBloodNet users in the functioning of the CPMS while identifying the main needs for the customization of CPMS dataset according to hematological requirements.
The operational helpdesk, besides assisting directly to the users in case that support is needed, has developed brief guiding material aiming to facilitate the steps to follow in the different stages of the case consultation. Material encompasses short video tutorials and short guides that are available in the CPMS dedicated section of the website how to use the CPMS. In the CPMS section you will also find general information on the platform and a link to the disease search tool as a way to look for experts for the panels.
The project “Connecting EuroBloodNet” has ended successfully the 30th September, to now expand the actions initiated through “Connecting EuroBloodNet II” (CEF TELECOM), aiming to a) promote the wide implementation of the CPMS while ensuring its efficient use, b) scale up the actions initiated under "Connecting EuroBloodNet" for the implementation of customized sets of data elements according to the ERN-EuroBloodNet needs c) implement the ERN-EuroBloodNet e-Learning platform.