KICK OFF FOR EUROPEAN ADTKD REGISTRY
ADTKD-Net brings together patient cohorts
April 14, 2024 - In March 2024, clinical scientists, basic researchers and nephrologists as well as a patient representative from 10 European countries met in Berlin at the Charité University Hospital to launch the ADTKD-Net research project. Coordinated by Prof. Kai-Uwe Eckardt and Prof. Jan Halbritter at the Charité Berlin, ADTKD-Net will start in mid-2024 and run for three years. The consortium is funded by the European Joint Program for Rare Diseases (EJO RD JTC 2023).
DIAGNOSIS OF MUC1 IS A CHALLENGE
The main goal of ADTKD-Net is to establish a European registry for ADTKD (autosomal dominant tubulointerstitial kidney disease), a rare inherited disease characterized by progressive renal scarring. Since affected patients have few symptoms, diagnosis is often missed, incorrect, and delayed. Genetic testing is essential for an adequate diagnosis, but is difficult for the very common ADTKD-MUC1 subtype.
There are currently no specific treatment options (yet). However, experimental studies have raised hopes for possible therapy options that will be tested in clinical trials in the future.
FIRST EUROPEAN OBSERVATIONAL STUDY FOR ADTKD
ADTKD-Net aims to promote this development by creating a dedicated European ADTKD registry. Existing national cohorts from several European countries will be brought together and augmented by the established platform of the European Reference Network for Rare Kidney Diseases (ERKNet). The standardized dataset will contain information on the manifestation and progression of the disease, imaging procedures, genetic testing, and blood and urine analyses. Once the ADTKD registry is established, it will serve as the basis for future clinical trials.
IMPULSES FOR BIOMARKER RESEARCH
A second goal of ADTKD-Net is to improve the unsatisfactory situation in the diagnosis of ADTKD. Within the ADTKD-Net project, new biomarkers based on urine, histology and imaging (MRI) are being investigated for their ability to reflect the severity and progression of the disease. This is of utmost importance for planning study designs. Of course, non-invasive biomarkers (urine, blood, imaging) are strongly preferred over invasive procedures such as biopsies.
All in all, the 17 lectures and encouraging discussions at the Charité were a day that gives hope to ADTKD patients worldwide.
Participant
Project coordination:
Kai-Uwe Eckardt, Berlin, Germany, Charité - University Medicine
Jan Halbritter, Berlin, Germany, Charité - University Medicine
Inka Gotthardt, Berlin, Germany, Charité - University Medicine
Project members (alphabetical):
Corinne Antignac
Hôpital Necker-Enfants Malades, Paris (France)
Kerstin Amann
University Hospital Erlangen (Germany)
Peter Conlon
Beaumont Hospital, Dublin (Ireland)
John Sayer
University of Newcastle upon Tyne, Newcastle (UK)
Olivier Devuyst
University of Zurich (Schweiz)
Laurence Heidet
Hôpital Necker-Enfants Malades, Paris (France)
Ewout Hoorn
Erasmus Medical Center, Rotterdam (The Netherlands)
Eric Olinger
Cliniques Universitaires Saint-Luc, Brüssel (Belgium)
Gregory Papagregoriou
Cyprus, University of Cyprus, Nicosia (Cyprus)
Bernt Popp
Berlin Institute of Health (BIH) (Germany)
Luca Rampoldi
Hospital Ospedale San Raffaele, Milano (Italy)
Franz Schäfer
Universitätsklinik Heidelberg - ERKNet-Koordinator (Germany)
Christian Scheidler
ADKD Vison Cure e.V. , Berlin (Germany)
Dominik Seelow
Berlin Institute of Health (BIH) (Germany)
Steven Sourbron
University of Sheffield (UK)
Roser Torra
Autonomous University of Barcelona (Spain)
Martina Živná
Charles University, Prag (Czech Republic)