VISIT THE ‘WEBCASTS’ SECTION to watch the videos of the lastest WGIKD events
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New publication in NDT
Genetic testing in the diagnosis of chronic kidney disease: recommendations for clinical practice, Nine Knoers et al.
Click here to watch the video

MISSION

The reason behind the creation of an ERA Working Group on Inherited Kidney Disorders:

As physicians, we are deeply concerned by the health care priority represented by inherited kidney diseases in Europe. These diseases represent a heavy physical and psychological burden for the affected patients, often children, and their families. The care of patients with inherited nephropathies suffers from major problems. The rarity of these conditions, and their phenotype variability, implies limited knowledge of the underlying mechanism(s) and natural course, lack of standardisation of diagnostic procedures, fragmentation of the clinical and biological data collections, small cohorts that restrict the power of clinical studies, without mentioning a lack of priority for the pharmaceutical industry and even public funding.

As researchers, we are aware of the necessity to generate and disseminate new scientific knowledge about the causes, mechanisms and consequences of inherited nephropathies. These efforts must involve exchange and networking at the EU level, to develop a global approach based on collaborations between complementary teams using various methodologies. An international collaboration is also crucial to avoid fragmentation of knowledge or duplication of efforts. Increasing knowledge on rare diseases will also yield new insights relevant for more frequent disorders (progression of renal disease, blood pressure control, prevention of renal stones, effect of gender and ageing, multi-systemic involvement of renal diseases, etc…).

BOARD

Nine Knoers (Netherlands) – Chair
Aude Servais (France) – Vice Chair
Giovambattista Capasso (Italy)
Ewout Hoorn (Netherlands)
Emilie Cornec Le Gall (France)
Roman Ulrich Müller (Germany)
Tom Nijenhuis (Netherlands)
John Sayer (United Kingdom)
Albertien van Eerde (Netherlands)
Stephen Walsh (United Kingdom)

HOW TO JOIN THE WORKING GROUP

Being a ordinary member of the WGIKD means being part of a network which facilitates exchanges of ideas on basic science research and new treatment protocols.

Becoming an ordinary member of the WGIKD Working Group is FREE OF CHARGE. Ordinary members must be ERA members and be persons with a proven interest in the research area covered by the WG. Exceptions are possible only for non-nephrologists.

By joining the WGIKD you will receive constant updates on the Working Group initiatives be included in the Directory of WGIKD’s ordinary members and start networking with colleagues from all over the world.

Click here to join.

The ordinary membership application is subject to validation. Please allow some time for a quick administrative check before applying multiple times.

ONGOING PROJECTS

  • Since 2017 WGIKD has embarked in a close collaboration with ERKNet, the EU-funded European Reference Network for Rare Kidney Diseases. WGIKD is partner, together with ERKnet, of the European Registry for Rare Kidney Diseases which was granted with a  EU Health Programme Research grant (360,000 EUR). WGIKD and ERKNet, the European Reference Network for Rare Kidney Diseases, are offering a Webinar series on rare kidney diseases. These are interactive live educational events, which are streamed approximately on a regular basis on Tuesdays at 4 pm CET. The Webinars are free of charge and only require prior registration. Read more
  • ERKnet Core Patient Registry (ongoing): The WGiKD started a collaboration with the European Reference Network for Rare Kidney Diseases (ERKNet) as per the creation of a Core Patient Registry aimed at establishing a Network-wide database of epidemiological information, to monitor performance quality and treatment outcomes, and to facilitate the identification of patient cohorts for clinical trials. The ERK-REG project, which is co-coordinated by WGiKD board members Franz Schaefer and Aude Servais, was recently awarded a 3-year grant by the EU (DG Sante Health Programme).

PUBLICATIONS

An update on the use of tolvaptan for ADPKD: Consensus statement on behalf of the ERA Working Group on Inherited Kidney Disorders (WGIKD), the European Rare Kidney Disease Reference Network (ERKNet) and Polycystic Kidney Disease International (PKD-International)
Nephrology Dialysis Transplantation, November 2021

Genetic testing in the diagnosis of chronic kidney disease: recommendations for clinical practice
Nephrology Dialysis Transplantation, July 2021 – Click here to watch the related NDT Author Video

Recommendations for the use of tolvaptan in autosomal dominant polycystic kidney disease: a position statement on behalf of the ERA-EDTA Working Groups on Inherited Kidney Disorders and European Renal Best Practice
Nephrology Dialysis Transplantation, March 2016

PRESS REALEASE ERA-EDTA recommendation on the use of tolvaptan in polycystic kidney disease
9 February 2016

Renal replacement therapy for autosomal dominant polycystic kidney disease (ADPKD) in Europe: prevalence and survival-an analysis of data from the ERA-EDTA Registry
Nephrology Dialysis Transplantation, September 2014

Building a network of ADPKD reference centres across Europe: the EuroCYST initiative
Nephrology Dialysis Transplantation, September 2014

Nephropathic cystinosis: an international consensus document
Nephrology Dialysis Transplantation, September 2014

Spanish guidelines for the management of autosomal dominant polycystic kidney disease
Nephrology Dialysis Transplantion, September 2014

Rare Inherited Kidney Diseases: Challenges, Opportunities, and Perspectives
The Lancet, May 2014

Analysis of data from the ERA-EDTA Registry indicates that conventional treatments for chronic kidney disease do not reduce the need for renal replacement therapy in autosomal dominant polycystic kidney disease
Kidney International, May 2014

The ERA-EDTA Working Group on inherited kidney disorders
Nephrology Dialysis Transplantion, September 2012

WEBCASTS

Autosomal dominant tubulointerstitial kidney disease (ADTKD) 
ERA WG e-seminar series #11 – organised by WGIKD
Click here to watch the webcast of the event


Genetic testing in kidney diseases 
ERA WG e-seminar series #5 – organised by WGIKD
Click here to watch the webcast of the event

PAST EVENTS

SEIDIn 2019 the ERA organised the Scientific and Educational Interaction Day (SEID) on October 25-26, 2019 in Vienna (Austria). WGIKD contributed in the creation of the Scientific Programme with the educational session on Ethical aspects of genetic testing in kidney diseases

Ethical aspects of using genetic results for clinical decision making
Albertien van Eerde, Utrecht, Netherlands
Presymptomatic testing in ADPKD
Flavia Galletti, Zurich, Switzerland
Genomic testing as part of mainstream nephrology;lessons for practicing nephrologists
Daniel Gale, London, United Kingdom

European Rare Kidney Diseases Network (ERKNet) Nephropathology Workshop – October 18-19 2018, Paris, France

How to become your local expert in Nephrogenetics – October 8-9 2018, Belgrade, Serbia

Advances in Metabolic, Stone forming diseases and Tubulopathies – March 19 2018, Heidelberg, Germany

Multidisciplinary management of inherited kidney diseases  – September 2017, Barcelona, Spain

Improving the care of patients with ADPKD, September 9-10 2016, Brussels (Belgium) – click here to view the available educational materials