Virtual discussions
One of the ERNs areas of work is to provide direct guidance to doctors through cross-border discussions of rare clinical cases, using a dedicated, secure, and online IT platform, known as the Clinical Patient Management System (CPMS).
The CPMS thus facilitates collaboration between healthcare professionals across Europe and support the diagnosis and treatment of rare, low-prevalence, and complex diseases.
The CPMS was launched in 2017 and was used to discuss more than 4500 rare and complex clinical cases. In 2024 the CPMS was upgraded to CPMS 2.0.
Key Features of CPMS 2.0:
- secure and efficient collaboration: CPMS 2.0 provides an even more secure environment for healthcare professionals to share patient information, discuss cases, and develop joint treatment plans.
- enhanced patient care: by facilitating efficient communication and information sharing, CPMS 2.0 helps to improve the quality and timeliness of patient care. It enables faster diagnoses, more accurate treatment plans, better patient outcomes and reduced patients’ travel.
- medical imaging: CPMS 2.0 has specialised visualisers for DICOM and SVS medical images, allowing clinicians to view and discuss the relevant image details.
- advanced data collection and reporting: CPMS 2.0 promotes extensive anonymised data collection and reporting, which improves data quality and facilitates data analysis. This data can be used to identify trends, monitor disease progression, and evaluate the effectiveness of treatments.
- security and data privacy: CPMS 2.0 is fully compliant with the General Data Protection Regulation. All data processing operations are based on patient consent. Data are encrypted in transit and at rest and audio/video conferencing and texting are end-to-end encrypted.
How to Access CPMS 2.0:
To access the CPMS 2.0 platform, healthcare professionals must work for an ERN member or affiliated partner. Credentials can be requested through their ERN helpdesk. All the user documentation (text and video) is accessible directly from the platform.
The platform code will be released as open source, paving the way for future national platforms, including for non-rare diseases. The CPMS 2.0 will provide a free, solid basis for developing similar IT systems at the national level. This will enable healthcare professionals to discuss cases online remotely and reduce the need for patient travel.
Patients do not access ERNs directly. However, under national health system rules and patients’ consent, national healthcare providers can share information with the relevant ERN to obtain advice for a specific patient’s case.
Data protection is handled under EU and national legislation.
The ERN Communication Platform (ECP) is a communication platform available to exchange nonclinical data among the members of a specific ERN, between ERNs, and other stakeholders of the ERN ecosystem.
Clinical practice guidelines
The ERNs also work on developing, updating and appraising Clinical Practice Guidelines. This helps to bring forward evidence based and unbiased information on rare diseases and to help standardise best practices. Ultimately, this aims to ensure high quality and effective of care for rare disease patients.
The further assist the ERNs in the work of Clinical Practice Guidelines (CPGs), the Commission also funded a project on CPGs and other Clinical Decision Support Tools (CDSTs) to assist the ERNs and their healthcare providers in the process of development, appraisal and implementation of CPGs and CDSTs and to improve the capacity of the networks in their task of producing and adhering to high-quality CPGs and CDSTs. This project came to an end in 2024.
Training and education
ERNs are dedicated to improving the quality of care provided to rare disease patients.
For this reason, they made available educational resources and training opportunities for healthcare professionals, such as, for instance, webinars (also interactive), knowledge exchanges, etc.
The training and education resources developed by the individual ERNs are available on their respective websites.
In addition, some ERNs have made available some of their training and education resources on the EU Academy website, an EU-owned online hub containing first-hand knowledge, high quality educational resources and valuable insights, directly produced by the EU institutions, for individuals whose work is related to its sphere of action.
Working Groups
According to Article 9 of the Rules of Procedure of the ERNs Coordination Group (CG), Working Groups (WGs) can carry out specific tasks relevant to the ERNs Coordinators, ERN Board of Member States and the Commission.
Each WG is led by an elected Chair, and all Chairs will constitute the Steering Group of the CG. The Steering Group will support the CG Chair in the management of the ERN-CG and may also propose ERN-CG initiatives. The Group also helps to ensure a strategic overview of the WGs and avoid duplication of work across the WGs.
There are currently, 5 active Working Groups on:
- legal and ethical issues and relations with stakeholders
- knowledge generation and education
- management activities
- monitoring
- the improvement of the evaluation
Registries
Registries are a very important stans of ERNs’ work. Any research on rare diseases can only take place if data is available and registries are the key as repositories of health data. The European Commission has been providing continuous funding for the development, coordination of and support for the functioning of the ERN registries.
Ukraine
It is estimated that there are more than two million Ukrainian patients with a rare or complex disease. To facilitate the work of Ukrainian medical doctors in this field, the European Commission has concluded an administrative arrangement with Ukraine that will help facilitate Ukrainian healthcare providers to seek advice on Ukrainian rare or complex disease patients from members of the European Reference Networks.
Upcoming grants worth 77.4 million EUR to support the European Reference Networks will cover the period 2023-2027 and include the possibility for the Networks to collaborate with Ukrainian competent authorities and healthcare units, thus contributing to capacity building and best practice sharing with Ukraine.
