Registry for People Diagnosed or Suspected with Autosomal Dominant Polycystic Kidney Disease to Support Research and Patient Care

What this Trial Is About

Researchers are establishing the ADPKD Patient Registry, an online network designed to include at least 5,000 people diagnosed or suspected to have Autosomal Dominant Polycystic Kidney Disease ADPKD. The goal is to support scientific research and patient needs by connecting patients with clinical study opportunities, collecting data on the disease experience, and measuring quality of life outcomes. This registry helps improve patient care and furthers understanding of ADPKD by gathering relevant health and demographic information while protecting patient privacy. Participants with ADPKD can join this secure, online registry accessible from home computers, tablets, or phones. Through the platform, patients contribute confidential health-related surveys to share their experiences and symptoms over time. The registry connects patients with researchers and offers chances to participate in clinical studies, including those testing new medications or treatments for ADPKD. During the study, researchers will review the number of people experiencing changes in health-related quality of life over one year. Patient data will be securely stored and used to inform future research on ADPKD outcomes and unmet needs. Participation involves completing surveys through the online platform, allowing ongoing engagement without physical visits. The registry is designed to be a long-term resource and will continue collecting data until at least September 2029.

ADPKD Patient Registry