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PKD Biomarkers Repository Study

About the Study - Why Participate?

Participating in the PKD Biomarkers study will help researchers discover new biomarkers that:

  • Monitor early changes in the kidneys as cysts begin to grow and cause damage.
  • Monitor the effectiveness of new drugs being developed for PKD.

Finding new biomarkers are important as new therapies are being developed and tested.

Who can Participate

  • Children age 4 years and above
  • Adults age 18 to 35
  • Diagnosed with PKD
  • Sibling of diagnosed study participants may also enroll if they have been screened and do not have kidney cysts
  • Able to have an MRI if age 7 years or older
  • Able to come to study visits yearly for the next 5 years in either Kansas City or Chicago

What do you have to do?

  • Provide medical history, have blood pressure, weight, and height measured
  • If previously diagnosed with PKD, participants age 7 and above will have an MRI of the kidneys every other year
  • Blood and urine will be collected at each visit
  • Study visits will require 1 hour (without MRI) and up to 2 hours (if visit includes an MRI) and must be done while the participant is fasting

Is there compensation?

  • There is no cost for being in the study or for the MRI
  • Subjects will receive $50 per visit
  • Travel reimbursement  and hotel lodging is provided for participants who live more than 50 miles away from Kansas City


Learn more about why we are doing this research and what it means for you.

Site Directors

Kansas Site Director
Darren P. Wallace, Ph.D.     
Professor and PKD Center Associate Director
Tel. 913-588-3889 (office)
Tel. 913-588-3811 (lab)

Missouri Site Director
Laurel Willig, MD
Pediatric Nephrologist 
Associate Professor of Pediatrics
University of Missouri-Kansas City School of Medicine
Children's Mercy Hospital 
2401 Gillham Rd Kansas City, MO 6410
Tel. 816-234-3030

Chicago Site Director
Arlene Chapman, MD
Professor of Medicine
Director, Section of Nephrology
Department of Medicine
Director, Clinical Research Center
Institute for Translational Medicine
Biological Sciences Division
University of Chicago
Tel. 773-702-8055
Fax: 773-702-5818
eFax: 773-753-8301

How Can I Participate?
Contact the Study Coordinators to learn more:

University of Kansas Medical Center Study Coordinators
Cathy Creed, RN 

Tel. 913-588-0053
Fax: 913-588-8986

Zhuo Tang
Tel: 913-588-3985
Fax: 913-588-8986

Mailing address at KUMC
3901 Rainbow Blvd
Kansas City, KS 66160

Kidney Institute

University of Kansas Medical Center
Kansas PKD Research and Translation Core Center
3901 Rainbow Boulevard

Kansas City, KS 66160