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PKD Biomarkers Repository Study

The PKD Biomarkers Repository study is a five-year study sponsored by the National Institutes of Health, for the purpose of helping researchers discover reliable biomarkers for ADPKD. An understanding of biomarkers for early renal cyst growth may benefit ADPKD patients as new therapies are being developed and tested.

This observational study will collect blood, urine, and clinical information from individuals diagnosed with early stage ADPKD, in addition to their unaffected siblings, and normal volunteers to create a biobank of samples.

The PKD Biomarkers Repository will allow approved researchers to obtain these samples for biomarker discovery and the development of appropriate biomarker assays for prognosis of early ADPKD.

Reasons why the discovery of biomarkers is important:

  • Current blood and urine tests are not useful for monitoring early events in ADPKD such as initial cyst growth and the damage which occurs to the surrounding kidney tissue.
  • Clinicians can identify patients who are at risk of rapid progression and would be most in need of therapeutic intervention
  • The development of biomarkers for ADPKD will be essential to establish the effectiveness of new treatments, and can indicate changes in the disease progression

This study is currently recruiting three groups of participants:

  1. Children and adults with early stage ADPKD, and normal kidney function, age 35 or younger
  2. Unaffected or undiagnosed family members, preferably siblings of individuals who are diagnosed with ADPKD and enrolled in the study, age 35 or younger
  3. Individuals with no family history of kidney disease, who have normal kidney function, age 35 or younger

Participation will involve the following:

  • Answering a questionnaire about your PKD and medical history
  • Providing blood and urine samples
  • Magnetic resonance imaging (MRI) of the kidneys every other year for diagnosed participants age 7 and above. For diagnosed children age 4 to 7, MRI is optional.

Participants will need to come for 7 visits during the 5 year study. There are two visits during the first year and one visit in each of the subsequent years.

Visits that include an MRI will require two hours, and all other visits can be completed in one hour.

Participants will receive payment for study visits and may also be eligible to receive a
travel stipend, and hotel lodging.

Sites:

Kansas City, Kansas
University of Kansas Medical Center
Principal Investigator and Site Director – Darren P. Wallace, Ph.D.

University of Kansas contact:
Cathy Creed – Clinical Research Coordinator
Tel. 913-588-0053
ccreed@kumc.edu

Kansas City, Missouri
Children’s Mercy Hospital
Site Director -Laurel Willig M.D.

Children’s Mercy Hospital contact:
Suzanne Herd – Clinical Research Coordinator
Tel: 816 -701-1344
smherd@cmh.edu