Network achievements, evaluation of progress and post-meeting feedback

Dear ERKNet members, partners and friends,

The ERKNet Virtual Annual Meeting was a challenging project but proved to be a great success. More than 220 participants attended the 5-day-long meeting via the Zoom platform. The conference included 2 plenary, 9 workgroup and 7 taskforce sessions.

The Meeting was a great opportunity to review the achievements of the Network to date and to discuss future plans. In this Newsletter we would like to take a chance to summarize the recent advances and future outlook of ERKNet activities.

Recently we also sent out a survey to collect your feedback about your experiences with our first Virtual Meeting and your evaluation of the progress and importance of ERKNet activities. The positive feedback presented below is a strong motivation to continue our work which would be impossible without the contribution of you.

We would like to thank all of our supporters, participants of the meeting and those who took their time to provide feedback!

Save the date of the next meeting: May 17-21, 2021 (Heidelberg, Germany)

NETWORK EXPANSION

• 8 Affiliated Partners and 3 National Hubs joined ERKNet in 2019
• 33 Centers applied for full membership and the Network is expected to expand from 12 to 25 EU countries

GUIDELINE DEVELOPMENT

• The ERKNet-ESPN guidelines on Congenital Nephrotic Syndrome were just published in the European Journal of Human Genetics
• Under revision: Cystinuria (w/ eUROGEN) and Bartter syndrome
• Under preparation: monoclonal gammopathies of renal significance (w/ EuroBloodNet), renal dysplasia, obstructive uropathies and a White Paper on nephrogenetic diagnostics
• Planned: ADPKD management (w/ ERA-EDTA), dRTA (w/ ESPN)

ONLINE EDUCATIONAL ACTIVITIES

• More than 40 educational webinars have been organized to date with >900 individual attendees 
• Joint Webinar Curriculum (w/ ESPN, IPNA & ERA-EDTA) on rare kidney diseases was launched in 2020 
• More than 800 research papers are included to date in the ERKNet Journal Watch database

POST-GRADUATE EDUCATION & E-LEARNING

• A 3-year structured post-graduate curriculum consisting of online webinars, interactive case-based e-Learning curriculum & CME courses is under development 
• The curriculum will be completed by a written exam and lead to a Certification as a "European Rare Kidney Disease Expert"

RESEARCH INITIATIVES

• Online surveys on pediatric ANCA vasculitis, Dent disease, nephrogenic diabetes insipidus, pregnancy & cystinosis, eculizumab in aHUS and PTH in Gitelman syndrome have been completed with excellent participation rates and are being analyzed 
• Preliminary results of an ongoing survey about COVID-19 in children with kidney disorders on immunosuppressive medications were recently published in Lancet Child & Adolescent Health

PATIENT INFORMATION & EXPERT FINDABILITY

• The ERKNet patient website now includes an interactive search tool to find disease-specific experts and centers 
• Patient information materials are being reviewed for existing gaps and adapted to a uniform template which will be followed by multilingual translations

ORPHANET COLLABORATION

• The Orphanet classification & nomenclature of rare kidney disorders is being updated with the help of ERKNet experts 
• Rare Kidney Descriptions in the Orphanet Encyclopedia for Professionals are updated by ERKNet experts: 32 disease descriptions have been completed & 39 updates are ongoing

ERKNet REGISTRY

• 30/38 ERKNet healthcare providers are actively enrolling patients into ERKReg, the European Rare Kidney Disease Registry
• 5000 patients have been enrolled to date (60% pediatric)

TRANSITION & QUALITY OF LIFE

• A survey on the Management of Transition of Young People with Rare Kidney Diseases within ERKNet was published in the European Journal of Human Genetics
• ERKNet guidelines for transition are in preparation
  
• The Taskforce considers to develop Patient-Centered Outcome Measures for certain rare kidney diseases
  

NETWORK VISABILITY AND DISSEMINATION

• More than 700 Twitter & Newsletter subscribers
• Follow us on Twitter @EuRefNetwork

The survey participants evaluated the overall progress of ERKNet and the individual ERKNet activities positively.

Guideline development, research initiatives and educational activities are viewed as the top 3 most important Network activities.

Despite very few minor technical problems, the meetings went smooth and sparked interesting discussions that were successfully carried out in the interactive platform.

Although the majority of audience consisted of ERKNet Members, this year's meeting was also joined by our new Affiliated Partners, applicant centers and also numerous experts from non-EU countries.

The vast majority of the meeting participants were satisfied with the quality of the event and the individual sessions.

• The majority thought that the duration of the event was alright and 23% found the meeting too long
  
• Majority of participants would attend virtual meeting again but only one third would prefer virtual over face-to-face meetings

You may find all presentations of the Virtual Meeting in the "Download" section after logging in to the ERKNet Website.