Clinical trial Recruiting at 3 sites Observational Ages 4 to 35

Observational study on early-stage polycystic kidney disease

Official title: Early PKD Observational Cohort Study

Run by University of Kansas Medical Center · NCT02936791 · Data updated 2026-11-12

This study is collecting samples from people with early-stage polycystic kidney disease and their family members to find signs that show how the disease is changing, which could help create new treatments.

Quick facts

Study typeObservational
Ages4 Years to 35 Years
SexAll
Enrollment250 (estimated)
SponsorUniversity of Kansas Medical Center
Academic / other
Locations3 sites (Chicago, Illinois and 2 other locations)
StatusRecruiting
StartedApril 2016
Main results expectedJune 2030
Study endsJune 2031
Registry record updatedApril 27, 2026
Trial IDNCT02936791 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include individuals with early-stage autosomal dominant polycystic kidney disease and their unaffected siblings.

Probably not a fit

Patients with advanced kidney disease or those with systemic illnesses may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study collects blood, urine, and clinical information from individuals with early-stage polycystic kidney disease (PKD), their unaffected siblings, and normal volunteers to create a biobank. The goal is to identify biomarkers that indicate changes in disease progression, particularly focusing on early renal cyst growth. By understanding these biomarkers, the study aims to enhance the development of new therapies for PKD before significant kidney function decline occurs.

Why it matters

Potential benefit: If successful, this study could lead to earlier detection and better management of polycystic kidney disease, ultimately improving patient outcomes.

How similar studies have gone: Other studies have explored biomarkers in PKD, but this specific approach focusing on early-stage disease is relatively novel.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Inclusion for early stage autosomal dominant polycystic kidney disease (ADPKD):

  * Family history of PKD
  * All races and ethnic groups
  * Glomerular filtration rate (GFR) \>80 ml/min per 1.73 m2
* Inclusion for Healthy Volunteers:

  * Male or female with no family history of kidney disease
  * All races and ethnic groups
  * Normal GFR

Exclusion Criteria:

* Non-insulin or insulin-dependent diabetes mellitus
* Systemic illness (i.e.systemic lupus erythematosus, vasculitis)
* Unable to provide written informed consent
* Unavailable for magnetic resonance imaging (MRI) and blood/urine collection

Where it's running

  • University of Chicago
    Chicago, Illinois, United States
    Recruiting
  • University of Kansas Medical Center
    Kansas City, Kansas, United States
    Recruiting
  • Children's Mercy Hospital
    Kansas City, Missouri, United States
    Recruiting

Study contacts

  • Principal investigator: Alan SL Yu, MD — University of Kansas Medical Center
  • Study coordinator: Cathy Creed, RN
  • Email: ccreed@kumc.edu
  • Phone: 913-588-0053

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

  • Amnioinfusion to help fetuses with kidney problems

    This study is testing if giving extra fluid to pregnant women with fetuses that have serious kidney problems can help improve the babies' chances of survival and healthy development.

    Recruiting Fetal Care Center, PLLC · Dallas, Texas · NCT06728228

  • Effect of a Ketogenic Diet on Polycystic Kidney Disease

    This study is testing if following a ketogenic diet for a year can help people with polycystic kidney disease keep their kidneys healthier and slow down the disease.

    Recruiting Ohio State University · Columbus, Ohio · NCT06325644

  • Observational study on Polycystic Kidney Disease

    This study is trying to learn more about autosomal dominant polycystic kidney disease by gathering information from 350 adults to improve understanding of the disease and its effects on health.

    Recruiting University of Maryland, Baltimore · Baltimore, Maryland · NCT01873235

  • Data collection for understanding Polycystic Kidney Disease

    This study is collecting detailed health information from people with autosomal dominant polycystic kidney disease to better understand the condition and improve treatment options.

    Recruiting The Rogosin Institute · New York, New York · NCT00792155

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.