Actively Recruiting
Early PKD Observational Cohort Study
Led by University of Kansas Medical Center · Updated on 2026-04-27
250
Participants Needed
3
Research Sites
52 weeks
Total Duration
On this page
Sponsors
U
University of Kansas Medical Center
Lead Sponsor
N
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are conducting an observational study to collect blood, urine, and clinical information from people with early stages of polycystic kidney disease (PKD), their unaffected siblings, and healthy volunteers. The main goal is to build a biobank to discover biological markers, or biomarkers, that signal changes in disease progression. Understanding these early markers can help improve monitoring and treatment as new therapies are developed for PKD. The study involves three groups: individuals diagnosed with early-stage PKD based on kidney volume and kidney filtration rate, unaffected or undiagnosed family members (preferably siblings), and normal volunteers without a family history of kidney disease. Participants will provide blood and urine samples which researchers will use for basic and translational research over a 10-year period. Participants will be asked to provide samples and clinical information at regular intervals to help researchers study early cyst growth and kidney tissue damage that current tests cannot detect. The study tracks important measures like kidney function and total kidney volume. This long-term research aims to support the discovery of new tests to better predict disease progression and monitor responses to future treatments. The study is open to individuals aged 4 to 35 years and includes healthy volunteers.
CONDITIONS
Brief Title
Early PKD Observational Cohort Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosed with early stage autosomal dominant polycystic kidney disease (ADPKD) with a family history of PKD
- Glomerular filtration rate (GFR) greater than 80 ml/min per 1.73 m2
- All races and ethnic groups are eligible
- Healthy volunteers with no family history of kidney disease
- Male or female participants
- Normal GFR in healthy volunteers
- Ages between 4 and 35 years
You will not qualify if you...
- Having insulin-dependent or non-insulin-dependent diabetes mellitus
- Presence of systemic illnesses such as lupus or vasculitis
- Unable to provide written informed consent
- Unable to undergo MRI and blood/urine sample collection
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Up to 10 years
Participants provide blood and urine samples for biomarker discovery and research on early polycystic kidney disease.
Trial Site Locations
Total: 3 locations
1
University of Chicago
Chicago, Illinois, United States, 60637
Actively Recruiting
2
University of Kansas Medical Center
Kansas City, Kansas, United States, 66160
Actively Recruiting
3
Children's Mercy Hospital
Kansas City, Missouri, United States, 64108
Actively Recruiting
Research Team
C
Cathy Creed, RN
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
3
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