ADPKD Patient Registry

The ADPKD Registry will be a patient-powered network of people with ADPKD. 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). A Registry keeps information in one place making it easier for researchers to utilize Registry information while still protecting the privacy of those who take part. The Registry will be hosted on a secure, online platform that patients can access using their home computers, tablets or phones. The purpose of the ADPKD Registry is to allow PKD patients to: * Connect with researchers and express interest in taking part in certain clinical studies for ADPKD, including studies of new medications and other treatments. * Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with PKD across their lifespans.