For most of Rare Diseases (RDs), expertise is scarce and heterogeneously distributed across the EU, especially in the case of ultra-rare diseases, many healthcare professionals, face problems for diagnosis and/or choosing among therapy options in some complex cases and a significant number of patients remain undiagnosed or misdiagnosed. This makes impossible offering a proper prognosis, treatment and genetic counselling to the patients.
Set-up under the 2011 Directive on Patient Rights in Cross-Border Healthcare, European Reference Networks (ERNs) are virtual networks bringing together medical specialists across Europe to tackle rare or complex diseases and conditions that require highly specialized healthcare and a concentration of knowledge and resources. Healthcare providers who are members of ERNs are connected through a dedicated IT platform and, using a variety of telemedicine tools, offer access to expertize and knowledge of multidisciplinary teams, enabling patients suffering from such conditions to receive the best advice for treatment and diagnosis.
In this context, the European Commission DG SANTÉ has provided ERNs with the Clinical Patient Management System (CPMS), a secure web-based application to support the networks in bringing expert specialised care to all patients in Europe the diagnosis and treatment of rare or low prevalence complex diseases or conditions across national borders.
The Clinical Patient Management System (CPMS) allows virtual consultation across national borders, ensuring that the needed expertise can travel to the patient, instead of the other way around.
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.
As main action funded under the call CEF TELECOM CALL FOR PROPOSALS 2017 CEF-TC-2017-2 for the project "Connecting EuroBloodNet", an Operational Helpdesk has been established 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.
Are you willing to learn how to use the CPMS? Find all you need to know, including supporting material and tutorials.