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ADPKD Patient Registry

Autosomal Dominant Polycystic Kidney Disease Patient Registry

Who can join

All ages · All sexes

Inclusion Criteria:

* Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)

Exclusion Criteria:

* caretakers, family members or friends of individuals with ADPKD

About the study

The purpose of the ADPKD Registry is to create an online patient network that includes at least 5,000 people with Autosomal Dominant Polycystic Kidney Disease (ADPKD) who contribute data on their health and other topics. The ADPKD Patient Registry aims to support important scientific discoveries and support patient needs in the following ways:

* Connect ADPKD patients with opportunities to join clinical studies. * Collect data for the research community to better describe the ADPKD disease experience and improve patient care. * Engage with patients by measuring quality of life outcomes.

Sponsor: PKD Foundation · Participants: 3,000 · Started: Sep 4, 2019

Contact the study team

• Chris Chen, PhD · Phone: 816-268-8472

Official record on ClinicalTrials.gov — NCT04039061

Locations in the U.S.

From ClinicalTrials.gov, data retrieved Oct 2, 2026. Each study sets its own eligibility; the study team decides who can join.