for Physicians
for Patients

Research Project

Project Title:

AUTOSOMAL DOMINANT TUBULOINTERSTITIAL KIDNEY DISEASE-Net A European registry based clinical research platform

Project Type:

 Observational Study, Enrolment not yet started
Adjunct biobank: DNA, Serum, Urine

Disease group(s):

 AD structural kidney disorders

Project Summary:

 Autosomal dominant tubulointerstitial kidney disease (ADTKD) comprises a group of rare inherited disorders characterized by progressive kidney scarring. Although affected individuals have few symptoms, ADTKD inevitably progresses to kidney failure. Genetic testing is essential for adequate diagnosis. However, due to limited awareness and restricted access to genetic testing, diagnosis is often missed or delayed. When diagnosed, patients and their families are challenged by a lack of specific treatment options to date. However, recent experimental studies have raised hope for possible treatments, which have to be tested in future clinical trials. To foster this development and improve life-expectancy and well-being of affected individuals, experts across and beyond Europe propose to create a dedicated European ADTKD-registry. Already existing national cohorts will be merged and expanded using the existing platform of the European Reference Network for Rare Kidney Diseases (ERKNet). The standardized dataset will include information on disease manifestation and progression, imaging, genetic, blood, and urine analyses. Better understanding of natural disease progression will enable clinical trials by identifying appropriate criteria for trial participation and surrogate markers that allow to assess the efficacy of treatments. This research will not only benefit ADTKD patients but also improve diagnosis and management of other rare kidney diseases. It will strengthen reference networks, address patient needs, and also enhance our understanding of more common kidney diseases.

Lead principal investigator(s):

 Kai-Uwe Eckardt, Berlin

Co-investigator(s):

 Michael Wiesener, Erlangen
Olivier Devuyst, Brussels
Corinne Antignac, Paris
Roser Torra, Barcelona
Peter Conlon, Dublin
Eric Olinger, Brussels

Project Period:

 01/2024   -   12/2026

Sponsors:

 EU
« Back to research page