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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 and adults up to age 35
  • You have been diagnosed with PKD
  • You are the sibling of a participant who has been diagnosed with PKD, and you do not have PKD or your diagnosis is not known.
  • You are capable of having an MRI if you are 7 years or older (MRI is optional for children under the age of 7)
  • You are able to come to study visits yearly for the next 5 years in either Kansas City or Chicago

What do you have to do?

  • You will be asked to provide information about your medical history, and blood pressure, height and weight will be measured.If you have been previously diagnosed with PKD and are 7 years or older, you will have your kidneys imaged every 2 years by MRI to determine total kidney volume. For children under the age of 7, the MRI is optional
  • Blood and urine will be collected  at each visit
  • The visits are 2 hours or less – there are two visits during the first year and one visit every year after that

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)

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, 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

University of Chicago Study Coordinator

Sara Speier | clinical research coordinator
Tel: 773-702-9865

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

PKD Biomarkers Study
Last modified: Sep 28, 2018