ERKNet Newsletter #1 | 28th Dec 2017

ERKNet Newsletter

The European Rare Kidney Disease Network

Dear members and supporters of the ERKNet,

2017 has been an exciting and fruitful year for all of us. Thank you for the enthusiasm and support that allowed us to finish this year with great success.

This ERKNet Newsletter is the first of a series that will update you regularly about the latest news and developments in the Network. Today we want to review the tasks we achieved in 2017 and the exciting plans for 2018.

Let 2018 be a year full of rewarding challenges!

Major Milestones of 2017

ERN kick-off meeting

The official kick-off meeting of all ERNs with more than 600 participants was held in Vilnius, March 2017. Click here to find more details about the meeting, including videos and presentations.

ERKNet kick-off meeting

More than 120 participants gathered in Heidelberg in May 2017 to launch the ERKNet. The meeting was utilized to discuss the perspectives and the challenges of the Network, and to form the ERKNet Working Groups (WGs) and expert Task Forces. 

Launch of the ERKNet website

The ERKNet website was launched in summer 2017. It is continuously updated with valuable resources for patients and physicians and the latest news about the activities of ERKNet. Click here to visit

Clinical guidelines reviews

The review of existing guidelines and clinical practice recommendations is the first major task of the Workgroups. To date, more than 160 documents have been pre-screened by the workgroup chairs and systematically reviewed by experts (two reviewers per guideline) using the AGREE PLUS platform. The scores of the reviews are currently under evaluation and the results of the assessment will be discussed within each Workgroup. 

European Comission grants

Members of the Taskforce "Registries & Outcomes" applied to an EU Health Programme call of for ERN Registries. We are happy to announce that the ERK-Reg proposal was selected for funding, as one of 5 projects among 19 submissions. The plan is to develop a Core Network-wide Registry collecting diagnostic information and disease specific quality and performance indicators from all patients with rare kidney diseases followed in the ERKNet centers.     
Another grant application was submitted to the Connecting Europe Facility (CEF) in Telecom to develop a helpdesk in support of the Clinical Patient Management System (CPMS), the ERNs' platform for virtual consulting. This application is still pending.  

Cooperation with Orphanet

A close cooperation with OrphaNet was started. Workgroup members recently held two Coding Workshops to optimize the classification of CAKUT and glomerular disorders. Entities with missing Orphacodes or outdated descriptions were identified, and writing assignments to incorporate novel contents and disease information were made.

Launch of the Patient Registry

The draft version of the ERKNet Patient Registry was prepared and is currently in the testing phase. Click here to find out more about the registry.

... and the Plans for 2018

  • The Annual ERKNet meeting will be held on May 9-10, 2018 in Heidelberg. Click here for more details.
  • The Annual Meeting will be held back to back with the first CME Course organized by ERKNet in collaboration with the ERA/EDTA Workgroup for Inherited Kidney Diseases (WGiKD). Chaired by Aude Servais and Detlef Bockenhauer, the course will focus on Hot Topics in Tubulopathies and Metabolic Nephropathies. Click here for more information.  
  • WGs will complete the endorsement procedure of existing guidelines. The guidelines will be published on the website and the implementation in all ERKNet centers will start.
  • Gap analysis will be started by the WGs to identify areas with the need for new clinical guidelines.
  • Disease-specific, clinically relevant outcome criteria will be defined for by the WGs and included for monitoring in the the ERKNet Patient Registry.
  • The Clinical Patient Management System (i.e. eConsulting platform) will be launched and physicians from within and outside ERKNet will have the possibility to request interdisciplinary online consultation for their patients.  
  • The online collection of patient information materials on rare kidney diseases will be completed. The most important documents will be translated into all European languages.

The European Rare Kidney Disease Reference Network | ERKNet


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