The Virtual platform of the European Reference Networks

The European Reference Networks for Rare Diseases (ERNs) were created

aiming to increase patient’s rights in cross-border healthcare as a way of addressing the needs of patients with rare diseases in Europe and also to facilitate sharing and pooling of expertise in rare diseases across the EU. The official kick-off of the ERN´s was on March 2017 and since then, expert clinicians and ePAGs (European patient representatives) have been working together in setting goals and work strategies to address the difficulties over assessing rare diseases.

The ERNs are envisaged as virtual networks of healthcare providers and professionals supported by a shared platform through which data may be shared safely.

How will the networks address cases virtually?

Through the CPMS platform, that will be transversal for all 24 networks, clinicians will work on sharing complex cases, will set up meetings and forums to discuss diagnosis, clinical follow-up, and treatment of specific cases. But currently, the platform is not yet operational and is on training more (image below),  in which clinicians are starting to test and add some example of cases.

 

Preview of the CPMS platform

 

The most important to know about the CPMS platform is that only clinicians that belong to the 24 network can introduce new cases, and is highly important for patient organizations as ALPE and for patients to inform national clinicians about the existence of ERN´s as well about the CPMS platform. So, when national clinicians are dealing with complex cases and need to referer it and they are not members of BOND, these clinicians can get in touch with expert clinicians members of BOND, in order to request them to add these complex cases to be discussed, evaluated and assessed on the CPMS platform.

Here you can check the list of HCP´s (Healthcare providers- hospitals) that belong to BOND and have clinicians involved in this network.

Also, before a new patient case is introduced in the CPMS platform, the patient has to give consent for data sharing. Next are a preview image of the consent form and the form itself that you can read in full. 

 

PATIENT CONSENT FORM FOR DATA SHARING in EUROPEAN REFERENCE NETWORKS FOR RARE DISEASES for PATIENT CARE and CREATION OF RARE DISEASE REGISTRIES - EN

 

We are looking forward that BOND and CPMS can accelerate the diagnosis of complex rare bone cases and give strong input on the clinical management and follow-up of patients as give new insights on clinical trials and clinicians and patients health education.