RECRUITING

ADPKD Patient Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Autosomal Dominant Polycystic Kidney Disease Patient Registry

Quick Facts

Study Start:2019-09-04
Study Completion:2029-09-04
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04039061

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)
  1. * caretakers, family members or friends of individuals with ADPKD

Contacts and Locations

Study Contact

Elise Hoover
CONTACT
816-268-8478
eliseh@pkdcure.org
Registry staff
CONTACT
registry@pkdcure.org

Principal Investigator

Chris Rusconi, PhD
PRINCIPAL_INVESTIGATOR
PKD Foundation

Study Locations (Sites)

PKD Foundation
Kansas City, Missouri, 64131
United States

Collaborators and Investigators

Sponsor: PKD Foundation

  • Chris Rusconi, PhD, PRINCIPAL_INVESTIGATOR, PKD Foundation

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2019-09-04
Study Completion Date2029-09-04

Study Record Updates

Study Start Date2019-09-04
Study Completion Date2029-09-04

Terms related to this study

Additional Relevant MeSH Terms

  • Polycystic Kidney Diseases