ADPKD Patient Registry

Recruiting now

Conditions studied: Polycystic Kidney Diseases

In brief

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.

Key facts

Study ID

NCT04039061

Run by

PKD Foundation

People needed

3000

Starts

2019-09-04

Expected to finish

2029-09-04

Last updated by the study team

2023-11-18

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)

You may not qualify if…

• caretakers, family members or friends of individuals with ADPKD

Where it is running

• PKD Foundation — Kansas City, Missouri, United States (enrolling)

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.