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

• Conditions: Polycystic kidney disease, ARPKD; Q61.1; Polycystic kidney, autosomal recessive

• Registration Number: DRKS00010261
• Lead Sponsor: niversitätsklinikum Köln

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2016-04-25
• Study Completion: 2023-12-31
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Complete
• Sex: All
• Target Recruitment: 750

Inclusion Criteria

Clinical or histological diagnosis of ARPKD
Signed informed consent

Exclusion Criteria

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

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

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

Secondary Outcome Measures

Name	Time	Method
n/a - pure observational study<br><br>Identification of clinical and/or biochemical risk markers