Building a network of ADPKD reference centres across Europe: the EuroCYST initiative

Journal article

Publication Details

Author(s): Petzold K, Gansevoort RT, Ong ACM, Devuyst O, Rotar L, Eckardt KU, Koettgen A, Pirson Y, Remuzzi G, Sandford R, Tesar V, Ecder T, Chaveau D, Torra R, Budde K, Le Meur Y, Wüthrich RP, Serra AL
Journal: Nephrology Dialysis Transplantation
Publisher: Oxford University Press (OUP): Policy B
Publication year: 2014
Volume: 29 Suppl 4
Pages range: iv26-iv32
ISSN: 0931-0509


Autosomal dominant polycystic kidney disease (ADPKD) is the most common monogenic inherited kidney disease, affecting an estimated 600 000 individuals in Europe. The disease is characterized by age-dependent development of a multiple cysts in the kidneys, ultimately leading to end-stage renal failure and the need of renal replacement therapy in the majority of patients, typically by the fifth or sixth decade of life. The variable disease course, even within the same family, remains largely unexplained. Similarly, assessing disease severity and prognosis in an individual with ADPKD remains difficult. Epidemiological studies are limited due to the fragmentation of ADPKD research in Europe.The EuroCYST initiative aims: (i) to harmonize and develop common standards for ADPKD research by starting a collaborative effort to build a network of ADPKD reference centres across Europe and (ii) to establish a multicentric observational cohort of ADPKD patients. This cohort will be used to study factors influencing the rate of disease progression, disease modifiers, disease stage-specific morbidity and mortality, health economic issues and to identify predictive disease progression markers. Overall, 1100 patients will be enrolled in 14 study sites across Europe. Patients will be prospectively followed for at least 3 years. Eligible patients will not have participated in a pharmaceutical clinical trial 1 year before enrolment, have clinically proven ADPKD, an estimated glomerular filtration rate (eGFR) of 30 mL/min/1.73 m(2) and above, and be able to provide written informed consent. The baseline visit will include a physical examination and collection of blood, urine and DNA for biomarker and genetic studies. In addition, all participants will be asked to complete questionnaires detailing self-reported health status, quality of life, socioeconomic status, health-care use and reproductive planning. All subjects will undergo annual follow-up. A magnetic resonance imaging (MRI) scan will be carried out at baseline, and patients are encouraged to undergo a second MRI at 3-year follow-up for qualitative and quantitative kidney and liver assessments.The ADPKD reference centre network across Europe and the observational cohort study will enable European ADPKD researchers to gain insights into the natural history, heterogeneity and associated complications of the disease as well as how it affects the lives of patients across Europe.

FAU Authors / FAU Editors

Eckardt, Kai-Uwe Prof. Dr. med.
Lehrstuhl für Innere Medizin IV

External institutions with authors

Autonomous University of Barcelona (UAB) / Universitat Autònoma de Barcelona
Centre hospitalier universitaire de Brest (CHRU Brest)
Centro Anna Maria Astori
Charité - Universitätsmedizin Berlin
Cliniques universitaires Saint-Luc (CHU St-Luc)
Istanbul University / İstanbul Üniversitesi
Universitätsklinikum Freiburg
Universitätsspital Zürich (USZ)
Universität Zürich (UZH)
Université Toulouse III - Paul Sabatier
University of Cambridge
University of Groningen / Rijksuniversiteit Groningen
University of Sheffield
Univerzita Karlova v Praze / Charles University in Prague

How to cite

Petzold, K., Gansevoort, R.T., Ong, A.C.M., Devuyst, O., Rotar, L., Eckardt, K.-U.,... Serra, A.L. (2014). Building a network of ADPKD reference centres across Europe: the EuroCYST initiative. Nephrology Dialysis Transplantation, 29 Suppl 4, iv26-iv32.

Petzold, Katja, et al. "Building a network of ADPKD reference centres across Europe: the EuroCYST initiative." Nephrology Dialysis Transplantation 29 Suppl 4 (2014): iv26-iv32.


Last updated on 2018-08-08 at 18:40