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

  • You are between 0 to 35 years of age
  • You have been diagnosed with PKD
  • You are capable of having an MRI
  • You are capable of traveling to the University of Kansas Medical Center in Kansas City or to the University of Chicago
  • You are able to come to study visits yearly for the next 5 years

What do you have to do?

  • A study coordinator will fill out a questionnaire about your medical history
  • If you have been previously diagnosed with PKD, you will have your kidneys imaged every 2 years by MRI to determine total kidney volume
  • Blood (~2-3 tablespoons) and urine will be collected twice the first year (time of enrollment and at 6 months) and then once every year for 5 years
  • The visits are 2 hours or less

Is there compensation?

  • There is no cost for being in the study or for the MRI
  • Travel reimbursement of $0.56 per mile for roundtrip mileage
  • If you live more than 50 miles away from KUMC; compensation is limited to $100
  • Hotel lodging near KUMC is provided
  • You will receive $50 for each study visit


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.     
Associate Professor and PKD Center Associate Director
Tel. 913-588-3889 (office)
Tel. 913-588-3811 (lab)

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

Debbie Griffin, RN

Tel. 913-588-7691
Fax: 913-588-8986

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

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

Children's Mercy Study Coordinator
Suzanne Herd, CCRC | Research Coordinator
Center for Pediatric Genomic Medicine/Genome Center
Children's Mercy Kansas City
P: (816) 701-1344, E:
2420 Pershing Road, Suite 100
Kansas City, MO 64108

Chicago Study Coordinator

Brittany Ray
Tel. 773-702-9865
Fax: 773-753-8301

Mailing address
5841 S Maryland Ave
Chicago, IL 60637
Rm: W-515A

PKD Biomarkers Study
Last modified: Jan 12, 2018