Indicator Details — Polycystic Kidney Disease Population: Prevalence of Hepatic Cysts Among Patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD)a
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a Adapted from Bae et al. (2006)

The overall prevalence of liver cysts among the ADPKD patients is high (83%)

Liver cysts are more common in older ADPKD patients (ages 35-46; 94%) than in younger ADPKD patients (ages 15-24; 58%)

Prevalence did not differ by gender
Chart Explanation: There was a considerable progression of renal cyst growth and renal enlargement among the participants of the CRISP cohort before the loss of kidney function. The overall prevalence of liver cystic disease among the CRISP participants was higher (almost 83%). Among patients between 15-24 years, 25-34 years, and 35-46 years of age, the prevalence was 58%, 85%, and 94% respectively.
The Consortium for Radiologic Imaging Studies of Polycystic Kidney Disease (CRISP) is a 10-year prospective cohort study that started in March 1999 and was created to develop innovative imaging techniques and analyses using magnetic resonance (MR) imaging to reliably and accurately measure cyst and renal volume in ADPKD individuals early in the course of their disease. The purpose of this study was to determine if (1) renal or cyst volume can be measured reliably and accurately; (2) change in renal or cyst volume can be detected over a relatively short period of time; and (3) an increase in cyst or renal volume is associated with loss of renal function in ADPKD. The primary overall goal of CRISP was to develop imaging methods to follow disease progression and to evaluate treatments for ADPKD.

Autosomal dominant polycystic kidney disease (ADPKD) is the most commonly inherited genetic renal disease and cause of kidney failure in adults and children. It is characterized by the growth of numerous cysts in the kidneys and often culminates in end-stage renal disease. CRISP was created to develop methods that reliably measure the progression of cyst and renal growth before loss of kidney function among individuals with ADPKD. A total of 230 ADPKD  patients between  15 and 46 years old and with a creatinine clearance of >70 ml/min were recruited for CRISP I. Enrolled subjects were evaluated at baseline (magnetic resonance imaging, clinical  evaluation) and for 3 years thereafter. Two years after the completion of CRISP I, participants were contacted again to schedule for a baseline evaluation for CRISP II (year 6). 203 participants were enrolled for CRISP II.  Complete methods can be found in Bae et al. (2006)
Description of MeasurePrevalence of hepatic cysts among patients with autosomal dominant polycystic kidney disease (ADPKD)
Data SourceConsortium for Radiologic Imaging Studies of Polycystic Kidney Disease (CRISP) study
Type of Data SourcePrivate
Data SetCRISP summarized data
Health Care System DataNo
Regional or National?National
Demographic GroupADPKD patients in the CRISP study with relatively intact initial renal function
NumeratorParticipants with ADPKD recruited with hepatic cysts
DenominatorEnrolled CRISP participants with ADPKD with meagnetic resonance imaging and clinical evaluation data
Definition of CKDCockcroft-Gault estimate of creatine clearence >70mL/min 
Primary Data Source IndicatorPresence of hepatic cysts
Primary Indicator Method of MeasurementHigh-resolution magnetic resonance imaging
Frequency of Measurement (Primary)Once. Baseline
Secondary (1) Data Source IndicatorAge
Secondary (1) Indicator Frequency of MeasurementOnce; baseline visit
Secondary (2) Data Source IndicatorGender
Secondary (2) Indicator Frequency of MeasurementOnce; baseline visit
U.S. Region Covered by Primary VariableMayo Foundation (Rochester, MN), University of Alabama (Brimingham, AL), Emory University (Atlanta, GA), University of Kansas Medical Center (Kansas City, KS)
Period Currently Available2001–2007
Additional Data Items of InterestNone
Limitations of IndicatorHepatic cysts measured only after first year of data collection
Analytical ConsiderationsData summarized by CRISP investigators (see Bae et al. as with all cohort studies, selection bias and possible confounding
References and Sources:
  • Bae KT, Zhu F, Chapman AB, et al. Magnetic resonance imaging evaluation of hepatic cysts in early autosomal-dominant polycystic kidney disease: the Consortium for Radiologic Imaging Studies of Polycystic Kidney Disease cohort. Clin J Am Soc Nephrol. 2006;1(1):64-9.
Suggested Citation:
Centers for Disease Control and Prevention. Chronic Kidney Disease Surveillance System—United States.