ERN Working Group on Knowledge Generation

ERN Working Group on Knowledge Generation

by Serena Bartezzati, ePAG Representative

Knowledge generation and dissemination is a key objective of the ERNs.  The Working Group (WG) on Knowledge Generation aims to create a common ERN strategy on education and training within a logical framework.

Education and Training Strategy:

One of the first activities of the group was to review the current ERN deliverables, training activities, and website content, which showed there are already multiple training tools, educational activities and programmes promoted by the ERNs and their members.

Although this shows the liveliness of the networks, it also highlights their fragmentation, which could divide attention across too many projects, and might not be easily accessible to a wider audience.  To overcome this, the Working Group will draft a document focusing on the situation and needs in terms of education and training involving the ERNs and the Board of Member States.

The first step is to develop a two-page Strategy Paper for the ERNs on a common educational goal for all ERNs.  It is important to focus on such a strategy in terms of knowledge, education and training to prevent the 24 ERNs going in 24 different directions, which would weaken their impact.

At the last meeting of the WG, metabERN and ERKNet presented the outlines of their experiences and projects in terms of knowledge generation and training courses.


The MetabERN Diagnostic, Clinic & Therapeutic Education Programme (DCTEP) was presented by Maurizio Scarpa.  This programme aims to train young physicians in Inherited Metabolic Diseases (IMDs) and provide them with experience and expert knowledge on the subject.  The course involves three modules: eLearning, webinars and internships.  The course will end with an exam to receive a MetabERN accredited certificate.

MetabERN aims to run a pilot at the beginning of 2021 with official release at the beginning of 2022.  This basic course would ideally be followed by an advanced course and an internship in one of the ERN’s major hospitals to receive practical experience.  At the end of the programme, a certificate from MetabERN will be issued, based on the European Credit Transfer and Accumulation System.


The ERKNet formula was presented by Franz Schaefer.  ERKNet began offering webinars in 2018 and offered 42 different webinars over 27 months.  40% of attendees were members of ERKNet and the others came from centres across Europe and the rest of the world.  80% of attendees were pediatric nephrologists because nephrological rare diseases are even less common in adults.  The webinars had around 1000 live followers and were downloaded by many afterwards.

In 2020, ERKNet started working more closely with patients’ societies on webinar topics and added some more relevant to adult nephrologists.  To keep interest high, ERKNet performs surveys to determine the best topics on a regular basis.

In 2020 the network began case-based eLearning covering 50+ cases across different areas of nephrology. A group of tutors and a reviewer panel will oversee the program.  ERKNet plans to organize a training workshop to make the eLearning fluid and functional.

Another aspect of the 2020 training program is the ERKNet Rare Kidney Disease Curriculum.  This is aimed at nephrologists (adult and pediatric) who achieving sub-specialisation and will include live courses, a minimum number of webinars and eLearning, as well as exchange stays.  The curriculum will last for three years and will end with a written exam.  ERKNet is looking into issuing a European Certificate in “Rare Kidney Diseases Specialism”.

MetabERN’s and ERKNet’s training programs could be the basis for discussion relating to the creation of an ERN strategy on education and training.  The WG members will decide which basic elements need to be included and how the networks can provide a form of endorsement.

ERN/EU Academy and the Virtual Environment:

DG SANTE is currently in discussion about a future ERN/EU Academy and system with all necessary elements and support.  The system will be a place to upload every document created for training and education and the Academy will certify trainees.

CEF Grants:

The call for CEF grants will be issued shortly. The contract will be valid for a period between 18 months and 2 years.  It will include a description of the eligible actions, including support for a helpdesk, eLearning activities, monitoring system support, and other IT-related activities.  All training and eLearning elements produced by the ERNs should follow the technical requirements compatible with the Moodle system.


To summarize the next steps are to:

  • Determine the unmet needs in education and training from the ERNs and the Member States.
  • Establish a standardized e-Training and e-Learning platform.
  • Collate webinars and publications in an integrated system that can be shared amongst the ERN.

The main concern is to establish an ERN education and training brand which certifies education in rare and complex diseases.  The objectives of this are to:

  • Support the ERNs in the production of high-quality training materials by providing them with the appropriated technical services and products.
  • Create, adapt, develop and maintain a standardized e-Training and e-Learning environment to collect, use and disseminate training and learning materials.
  • Develop an Academy type structure on rare and complex diseases which is kept up-to-date and where scholars must revalidate every 4-5 years.