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Indicator Details — Polycystic Kidney Disease Population: Annual Change in Total Kidney Volume in Patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD)a
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a Adapted from Harris et al. (2006) and Torres et al. (2011)

The overall mean increase in total kidney volume (TKV) among the ADPKD patients from a baseline of 1,073 ml over 3 years is high (68 ml)

The total kidney volume change was twice as high among individuals with PKD1 mutation vs. individuals with PKD2 mutations (71 ml and 34 ml respectively)
Chart Explanation: The overall mean increase in total kidney volume (TKV) from a baseline of 1,073 ml among CRISP participants over 3 years was 68 ml. The most common gene mutations (PKD1 or PKD2) were found in almost 90% of the individuals with ADPKD. Total kidney volume change was greater among individuals with PKD1 mutation (71 ml) compared to individuals with PKD2 mutation (34 ml) 
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 241 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 Harris et al. (2006) and Torres et al. (2011)
Description of MeasureAnnual change in total kidney volume in patients with 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 enrolled with total kidney volume data
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 IndicatorTotal kidney volume
Primary Indicator Method of MeasurementHigh-resolution magnetic resonance imaging
Frequency of Measurement (Primary)Once. Baseline
Secondary (1) Data Source IndicatorGene type
Secondary (1) 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 Indicatorselection bias, confounding.
Analytical ConsiderationsData summarized by CRISP investigators (see Harris et al. (2006) and Torres et al. (2011) as with all cohort studies, selection bias and possible confounding
References and Sources:
  • Torres VE, Grantham JJ, Chapman AB, et al. Potentially modifiable factors affecting the progression of autosomal dominant polycystic kidney disease. Clin J Am Soc Nephrol. 2011;6(3):640-7.
  • Harris PC, Bae KT, Rossetti S, et al. Cyst number but not the rate of cystic growth is associated with the mutated gene in autosomal dominant polycystic kidney disease. J Am Soc Nephrol. 2006;17(11):3013-9.

Suggested Citation:
Centers for Disease Control and Prevention. Chronic Kidney Disease Surveillance System—United States.
website. http://www.cdc.gov/ckd