Virtual discussions
One of the intervention areas of the ERNs is the provision of direct guidance to treating doctors by conducting cross-border discussions of rare clinical cases. This is done using a dedicated IT platform known as the CPMS 2.0 – Clinical Patient Management System.
The CPMS 2.0 is a secure and privacy preserving IT platform, allowing expert clinicians across EU to work together towards the establishment of a diagnostic and/or the provision of advice on treatment options for specific patients with rare, low prevalence and complex diseases.
The CPMS 2.0 is available as open source for any Member State or other stakeholder wanting a free and full customizable codebase solution to develop national IT platforms.
In addition, a collaborative platform (ECP) is available to exchange nonclinical data among the members of a specific ERN, between ERNs, and/or other stakeholders of the ERN ecosystem.
Patients do not access ERNs directly. However, under the rules of national health systems and with the patient's consent, a national healthcare provider can share information with the relevant ERN to obtain advice for a specific patient case. Data protection is handled under EU and national legislations.
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, 6 active Working Groups on:
- legal and ethical issues and relations with stakeholders
- knowledge generation and education
- management activity
- 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.