An international registry study on autosomal recessive polycystic kidney disease (ARPKD)

An international registry study on autosomal recessive polycystic kidney disease (ARPKD) - ARegPKD

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00010261

Enrollment

500

Registered

2016-04-25

Start date

2013-05-29

Completion date

Unknown

Last updated

2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Polycystic kidney disease, ARPKD Q61.1

Interventions

Group 1: Pure observational registry study. Pro- and retrospective collection of clinical data (e.g. liver- and kidney-related laboratory values, ultrasound data, data on renal replacement therapy etc

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: Clinical or histological diagnosis of ARPKD Signed informed consent

Exclusion criteria

Exclusion criteria: Clinical, histological or genetic diagnosis of any other cystic kidney disease

Design outcomes

Primary

Measure	Time frame
n/a - pure observational study Clinical characterization of ARPKD patients within the Setting of current Treatment. A first Goal is the collection of data on a large international and deeply phenotyped cohort of ARPKD patients.	—

Secondary

Measure	Time frame
n/a - pure observational study Identification of clinical and/or biochemical risk markers	—

Countries

Austria, Belarus, Belgium, China, Czechia, Egypt, Estonia, France, Georgia, Germany, Greece, Hungary, India, Iran, Italy, Lithuania, Netherlands, Poland, Portugal, Romania, Russia, Serbia, Spain, Switzerland, Tunisia, Turkey, United Arab Emirates, United Kingdom

Contacts

Public ContactMax Liebau

Unikinderklinik KölnPädiatrische Nephrologie

max.liebau@uk-koeln.de0221-478-4319

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026