Network achievements, evaluation of progress and post-meeting feedback

Dear ERKNet members, partners and friends,

Following the first experience last year, the second ERKNet Virtual Annual Meeting has proven to be as successful as the previous one. More than 260 participants from 68 centers attended the 3-day-long meeting via the Zoom platform.

The Meeting was a great opportunity to review the achievements, collaborative activities and recently launched educational programme of the Network. In this Newsletter we would like to take a chance to summarize the recent advances and future outlook of ERKNet activities.

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

Your ERKNet Team

NETWORK DEVELOPMENTS

• 34 centres applied for full membership in the 2nd call, 31 received a positive opinion from ERKNet and are currently under review by an independent agency. The Network is expected to expand from 12 to 25 EU countries
• Brexit led to the unfortunate loss of 5 prominent UK centers but:
  • Individual professionals will continue to be involved as external experts
  • UK ePAG members are welcome to continue their participation 
  • UK centers are welcome to register patients to ERKReg

GUIDELINE DEVELOPMENT

• ERN Guideline Programme. A consortium of 5 Health Technologies Assessment Agencies and 2 Specialized Health Training Institutions were contracted by the European Commission to provide assistance and support the ERNs in the development of Clinical Practice Guidelines.
• An ERKNet Expert Panel has been formed, which comprises clinical experts, patient representatives, methodologists and representatives of the renal societies ERA-EDTA, ESPN and IPNA. The Panel will start with support for the upcoming TSC and Dent Disease guidelines.
• The ERKNet-ESPN guidelines on Distal Renal Tubular Acidosis were just published in Nephrology Dialysis Transplantation
• 5 clinical guidelines were published in 2020:
  • Genetic aspects of Congenital Nephrotic Syndrome (w/ESPN)
  • Management of Congenital Nephrotic Syndrome (w/ESPN)
  • Molecular diagnostics of Alport Syndrome (w/Alport WG)
  • Cystinuria: clinical practice recomendations (w/eUROGEN)
  • Diagnosis and management of Bartter Syndrome

• Papers in preparation/revision: monoclonal gammopathies of renal significance (w/ EuroBloodNet), renal dysplasia, obstructive uropathies and a White Paper on nephrogenetic diagnostics;
• Under development: Dent Disease, Nephrogenic Diabetes Insipidus, Tuberous Sclerosis Complex, Bardet-Biedl Syndrome (w/ ERN-Eye), Apheresis, Atypical HUS.

SUCCESSFUL LAUNCH OF THE 'ERK-UCATION' PROGRAMME

• The first class of Postgraduate Curriculum in Rare Kidney Diseases attracted 231 participants from 22 European countries.
• Students of the postgrduate curriculum will be granted a Rare Kidney Disease Specialist certificate after the completion of the 3-year course. Registrations for the next class will be open October-December 2021!
• To date, ERKNet has organized more than 60 Educational Webinars.
• The attendance rate of the Webinars doubled to over 200 participants per webinar since the start of the post-graduate curriculum. Participant satisfaction is excellent. 
• The curriculum offers a constantly increasing number of eLearning cases on the diagnosis & treatment of rare kidney diseases in children and adults, created by the senior experts of the ERKNet community.

START OF THE CLINICAL EXCHANGE PROGRAMME

• The recently launched Clinical Exchange Programme offers 44 person-week packages for junior and senior ERKNet Experts to visit other ERKNet centers throughout 2021-2022
  
• The first of the 3 expected rounds of the programme have started and proposals to visit potential host centers are welcome with more information here

EJP RD RESEARCH FELLOWSHIPS

• Research Mobility Fellowships aim to support PhD students, Postdocs, and MDs in training to undertake scientific visits fostering specialized research training.
• 2 calls will be launced per year until 2023. ​So far, 3 applications rounds have been completed and in each round one ERKNet fellow was accepted. The acceptance rate in this programme is more than 60%.
• Find more information about the fellowships here.

PATIENT INFORMATION AND ePAG ACTIVITIEs

• The ERKNet patient website is now available in other languages (German, French, Spanish, Italian, Portuguese, Polish, Slovenian with more translations to follow soon)
• Multilingual ERKNet Patient Information Materials with a common template are under preparation for a variety of rare kidney disorders
• 29 patient organizations representing thousands of European rare kidney disease patients are partnering with ERKNet to bring Network activities to patient needs

ORPHANET COLLABORATION

• ERKNet experts are continuing collaboration with Orphanet to update the classification & nomenclature of rare kidney disorders 
• 47 disease abstracts and 8 definitions have been published to date and 26 are in progress

ERKNet REGISTRY

• 10,000 patients have been enrolled (68% pediatric) into ERKReg, the European Rare Kidney Disease Registry!
• An Article describing objectives, design and initial results of ERKReg has just been published in Orphanet Journal of Rare Diseases!
• The 1st ERKReg Annual Report summarizing patient enrollment, clinical phenotypes and results of key performance indicators monitoring has been published online in July 2020
• The 2nd Annual Report is expected to be published soon
• 2 ERKReg Subregistries dedicated to specific rare kidney diseases (Pediatric Lupus Nephritis and Distal Renal Tubular Acidosis) are open for patient enrollment. Another subregistry for patients with Cystinuria is being finalized and will open soon.

ERKNet CPMS ACTIVITY

• ERKNet Clinical Patient Management System has 40 active registered users but the panel discussion rate remains low
• A survey aimed at identifying obstacles precluding more active use has been conducted among ERN Helpdesk Teams and changes to reduce platform complexity are undertaken

ERKNet SURVEYS

• More than 10 ERKNet Surveys covering various aspects of rare kidney diseases have been completed and are being analyzed
• The results of 2 surveys have been published already:
  • COVID-19 in children with kidney disorders on immunosuppressive medications in Lancet Child & Adolescent Health
  • Treatment and long-term outcomes of dRTA in NDT

• The survey on patients with SRNS and NUP93 is still open. If you have such patients, please send an e-mail to b.lipska@gumed.edu.pl for further details.

85% of the respondents to our survey rated the Network progress as very good or excellent, up 10% from last years survey.

The top 3 activities ranked as most important to ERKNet Members were: research initiatives, guideline development and educational activities.

Educational activities, guideline development and ERKReg were rated as top 3 for the best quality and progress over the last year.

This year's meeting attracted a total of 262 participants from 68 centers (33 member, 9 affiliated partner and 22 applicant centers). In addition to the busy schedule that covered updates on various Network activities, the Meeting also included 3 social activities including random knowledge quizes.

• All survey respondents were satisfied with the event and >80% rated its quality as very good or excellent.

• Majority indicated that Working Group meetings should take place every 4 or 6 months (43% and 48%, respectively).

• Although the quality of the Virtual Meeting was rated ver well most attendees would prefer face-to-face or hybrid meeting format.

Please note that all presentations can be accessed in the password-restricted member area in the ERKNet Website (Downloads section).

Hoping to meet everyone in person next year!