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
Video
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) e-mail: dwallace@kumc.edu
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 e-mail: Achapman1@medicine.bsd.uchicago.edu 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 e-mail: ccreed@kumc.edu
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: smherd@cmh.edu 2420 Pershing Road, Suite 100 Kansas City, MO 64108
