Autosomal Dominant Polycystic Kidney Disease Patient Registry
Status: Recruiting
Location: See location...
Study Type: Observational
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)
Locations
United States
Missouri
PKD Foundation
RECRUITING
Kansas City
Contact Information
Primary
Elise Hoover
eliseh@pkdcure.org
816-268-8478
Backup
Registry staff
registry@pkdcure.org
Time Frame
Start Date: 2019-09-04
Estimated Completion Date: 2029-09-04
Participants
Target number of participants: 3000
Treatments
ADPKD patients
Patients with a diagnosis, or suspected diagnosis, of ADPKD
Related Therapeutic Areas
Sponsors
Leads: PKD Foundation