The largest academic cohort study investigating polycystic kidney disease. Cohort
The largest academic cohort study investigating polycystic kidney disease.
DIPAK is a prospective observational study with serial follow-up investigating autosomal dominant polycystic kidney disease (ADPKD), a rare kidney disease.

The purpose of the DIPAK cohort is to learn more about the disease course, to gather information on factors that influence disease severity, and how the disease affects quality of life. The DIPAK consortium is one of the research consortia started in the Netherlands with a grant from the Dutch Kidney Foundation (Nierstichting). It was founded in 2011 by four university medical centres (Groningen, Leiden, Nijmegen and Rotterdam).

DIPAK aims to:

  • describe the natural course of ADPKD;
  • discover risk factors for rapid disease progression;
  • discover novel elements of the pathophysiology of the disease;
  • study determinants of the quality of life of affected individuals.
  • Adult subjects affected by autosomal dominant polycystic kidney disease (ADPKD) as diagnosed by the revised Ravine-Pei criteria.

  • Please visit the UMCG Research Data Catalogue for more detailed information on our data and samples.  

    Data categories:

    • Biological samples
    • Survey data
    • Imaging data
    • Medical records

    Sample categories:

    • Fluids and secretions
    • Genetic material

    Areas of information:

    • Socio-demographic and economic characteristics
    • Lifestyle and behaviours
    • Perception of health, quality of life, development and functional limitations
    • Medication and supplements
    • Physical measures and assessments
    • Laboratory measures
  • University Medical Center Groningen

    • UMCG department Nephrology;
    • UMCG department Radiology;
    • UMCG department Urology;
    • UMCG department Hepatology;
    • UMCG department Pediatrics;

    Erasmus Medical Center Rotterdam

    • department Nephrology;


    • department Nephrology;
    • department Human Genetics;
  • Other steering committee members are:
    Prof. Tom Nijenhuis, dept. Nephrology, Radboud UMC Nijmegen
    Prof. Joost Drenth, dept. Hepatology, Radboud UMC Nijmegen
    Dr. Mahdi Saleh, dept. Nephrology, Erasmus UMC Rotterdam
    Prof. Dorien Peters, dept. Human Genetics, Leiden UMC  


How DIPAK benefits to society

Researchers attached to the DIPAK consortium have been instrumental in the discovery of the polycystic kidney and the polycystic liver disease genes. They discovered new elements of the pathophysiology of the disease by studying mice models, and risk markers for rapid disease progression. They were involved in writing several guidelines how to treat the disease. Lastly, a multidisciplinary  protocol was developed how to treat chronic, incapacitating pain that many ADPKD patients suffer from.


Ron Gansevoort
Ron Gansevoort Professor of Internal Medicine

University Medical Center Groningen (UMCG)
PO Box 30.001
9700 RB Groningen
The Netherlands

Visiting address
University Medical Center Groningen (UMCG)
Antonius Deusinglaan 1
9713 AV Groningen