Online registry for patients with Autosomal Dominant Polycystic Kidney Disease
Autosomal Dominant Polycystic Kidney Disease Patient Registry
PKD Foundation · NCT04039061
This study is creating an online registry for people with Autosomal Dominant Polycystic Kidney Disease to collect health information and connect them with research opportunities to improve care and understanding of the condition.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 3000 (estimated) |
| Sex | All |
| Sponsor | PKD Foundation (other) |
| Locations | 1 site (Kansas City, Missouri) |
| Trial ID | NCT04039061 on ClinicalTrials.gov |
What this trial studies
The ADPKD Registry is an observational initiative designed to create a comprehensive online network for individuals diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD). It aims to gather health data from at least 5,000 participants to enhance understanding of the disease, improve patient care, and connect patients with clinical study opportunities. Participants will engage in confidential health-related surveys that measure quality of life and other relevant health outcomes. The registry will ensure privacy while providing valuable data for researchers to address unmet medical needs in the ADPKD community.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed or suspected to have Autosomal Dominant Polycystic Kidney Disease.
Not a fit: Patients who are caretakers, family members, or friends of individuals with ADPKD will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could significantly enhance the understanding of ADPKD and improve patient outcomes through better-targeted research and treatment options.
How similar studies have performed: Other patient registries have shown success in advancing research and improving patient care in similar conditions, indicating a promising approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD) Exclusion Criteria: * caretakers, family members or friends of individuals with ADPKD
Where this trial is running
Kansas City, Missouri
- PKD Foundation — Kansas City, Missouri, United States (RECRUITING)
Study contacts
- Principal investigator: Chris Rusconi, PhD — PKD Foundation
- Study coordinator: Elise Hoover
- Email: eliseh@pkdcure.org
- Phone: 816-268-8478
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Polycystic Kidney Diseases