ADPKD Patient Registry

Autosomal Dominant Polycystic Kidney Disease Patient Registry

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT04039061

Acronym

ADPKD

Enrollment

3000

Registered

2019-07-31

Start date

2019-09-04

Completion date

2029-09-04

Last updated

2023-11-18

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Polycystic Kidney Diseases

Brief 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.

Detailed 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, online platform that patients can access using their home computers, tablets or phones. The purpose of the ADPKD Registry is to allow PKD patients to: * Connect with researchers and express interest in taking part in certain clinical studies for ADPKD, including studies of new medications and other treatments. * Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with PKD across their lifespans.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

OTHER

Eligibility

Sex/Gender

ALL

Healthy volunteers

Inclusion criteria

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

Exclusion criteria

* caretakers, family members or friends of individuals with ADPKD

Design outcomes

Primary

Measure	Time frame	Description
Number of people with polycystic kidney disease who experience health-related quality-of-life changes	1 year	To be assessed with online modules, developed both internally and through validated partners

Countries

United States

Contacts

Primary ContactElise Hoover

eliseh@pkdcure.org816-268-8478

Backup ContactRegistry staff

registry@pkdcure.org

Outcome results