The ADPKD Registry is a collection of individuals with autosomal dominant polycystic kidney disease (ADPKD). The purpose of the Registry is to create a patient network that includes at least 5,000 people with ADPKD who contribute data on their health and other topics.
This data will inform new research to improve ADPKD patient outcomes, learn more about the patient journey, and discover unmet medical needs. We collect data most relevant to your ADPKD diagnosis, its major symptoms and management, as well as key demographic data (no personally identifiable information is shared).
The ADPKD Registry keeps information in one place making it easier for researchers to utilize the information while still protecting the privacy of those participating.