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Summary
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.
Official title: Autosomal Dominant Polycystic Kidney Disease Patient Registry
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
3000
Start Date
2019-09-04
Completion Date
2029-09-04
Last Updated
2023-11-18
Healthy Volunteers
No
Conditions
Locations (1)
PKD Foundation
Kansas City, Missouri, United States