Contact: Alan Yu, Core Director; info@pkd-rrc.org

Core Resources — Clinical Phenotyping

Early PKD Observational Cohort Study (EPOC)

The goal of EPOC is to build a repository of biosamples collected from ADPKD patients during the earliest stages of the disease, that are linked to a longitudinal follow-up database with serial kidney imaging studies, and clinical outcomes. The major inclusion criteria are: age 4-35 years and eGFR > 80 mL/min/1.73 m2. Participants are recruited from 3 sites: (1) University of Kansas Medical Center (2) University of Chicago (to enrich the cohort for racial minorities), and (3) Children’s Mercy Hospital, Kansas City (to recruit younger children with ADPKD and their siblings).

Current participant census (189, as of 9/2024):

• ADPKD patients 116 (37 children <18yr, 79 adults)
• At-risk siblings 14
• Unaffected siblings 9
• Normal controls 50

Follow-up duration (as of 9/2024) 

• ADPKD patients:  up to 8.3 years (median 4.4 years)

Biorepository:

• Urine
• Urinary exosomes
• Plasma
• Sera
• DNA

Clinical Phenotyping

Clinical history:

• Age of diagnosis
• History of renal and cyst complications: pain, hemorrhage, infection, rupture, stones, hematuria, subarachnoid hemorrhage
• Exposures – including caffeine, tobacco, alcohol and cannabanoids
• Non-ADPKD co-morbid conditions
• Reproductive history
• Concomitant medications, including tolvaptan use

Family History – Including age of ESRD and death of affected family members

Physical Exam:

• Resting blood pressure, heart rate and temperature
• Height, weight

Clinical Laboratory Results

• Electrolytes (estimated GFR from CKD-Epi equation)
• Urine protein/creatinine ratio

PKD Genotype

Renal and Hepatic MRI (every 2 years): Total Kidney Volume (TKV)

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