An observational study in Polycystic Kidney Diseases, sponsored by PKD Foundation. Recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-09-22.
Sponsored by PKD Foundation · Observational
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:
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:
158 studies on the registry are indexed under Polycystic Kidney Diseases; 21 are open to participants now.
This study's planned enrollment of 3,000 is above the median of 154 across 39 observational studies indexed under Polycystic Kidney Diseases.
Browse Polycystic Kidney Diseases studies →This is the only study on the registry with PKD Foundation as lead sponsor.
Counted across the registry records on this site, refreshed daily.
Anyone with ADPKD, or suspects that they have ADPKD, is welcome to participate
Exclusion Criteria:
Patients with a diagnosis, or suspected diagnosis, of ADPKD
Number of people with polycystic kidney disease who experience health-related quality-of-life changes
To be assessed with online modules, developed both internally and through validated partners
Time frame: 1 year
Plan to share: Undecided
No publications or documents are linked to this record.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.