ADPKD Patient Registry
ConditionPolycystic Kidney Diseases
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorPKD Foundation
About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)
Disqualifiers
caretakers, family members or friends of individuals with ADPKD
Trial population
Anyone with ADPKD, or suspects that they have ADPKD, is welcome to participate
Trial design
Design model
Cohort
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
3,000 Participants
are grouped into 1 trial groupGroup A: ADPKD patients
Trial outcomes
Primary outcomes
1
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 yearSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov