Autosomal Dominant Polycystic Kidney Disease Patient Registry
PKD Foundation
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.
Description
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, onl…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD) Exclusion Criteria: * caretakers, family members or friends of individuals with ADPKD
Location
- PKD FoundationKansas City, Missouri