Online Registry Collects Health Data From People With Polycystic Kidney Disease
Builds an online network of people with inherited kidney cyst disease sharing health information.
Plain-language title generated from the registry record
Registry title: ADPKD Patient Registry
Key facts
- Where
- Kansas City, United StatesSee the site
Where in United States
- PKD FoundationKansas City, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- PKD Foundation
- Trial code
- NCT04039061
- Record updated
- 22 September 2026
- Original description
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:Read full original descriptionShow less
Autosomal Dominant Polycystic Kidney Disease Patient Registry
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.
Inclusion: Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD).
Exclusion: caretakers, family members or friends of individuals with ADPKD.