Early PKD Observational Cohort Study (EPOC)

Overview

This longitudinal observational study will involve the collection of blood, urine, clinical information, and magnetic resonance imaging (MRI) for measurement of total kidney volume, from individuals with early-stage polycystic kidney disease (PKD).

The goal is to create a biobank (also called a biorepository) of samples and clinical information that will be available for use by approved researchers to aid in the development of new biological markers (biomarkers).  The study aims to increase knowledge of unique biomarkers that are associated with early cyst growth and disease progression.

You may be able to participate if you:

• Between the ages 4-35 years old
• Diagnosed with ADPKD through imaging or genetic testing
• Glomerular filtration rate (GFR) >80 ml/min per 1.73 m2

Locations

Illinois

• University of Chicago
• Chicago, IL 60637
• Contact: Wanda Saleh 773.795.0976 wandas@bsd.uchicago.edu
• Site principal investigator: Arlene Chapman, MD

Missouri

• University of Kansas Medical Center
• Kansas City, MO 66160
• Contact: Cathy Creed, RN 913.588.0053 ccreed@kumc.edu
• Site principal investigators: Alan SL Yu, MD and Darren Wallace, PhD.

• Children’s Mercy Hospital
• Kansas City, MO 64108
• Contact: Marissa Beidelschies, RN 816.701.1344 mkbeidelschies@cmh.edu
• Site principal investigator: Laurel Willig, MD