TY - JOUR
T1 - Rationale and design of a multicenter Chronic Kidney Disease (CKD) and at-risk for CKD electronic health records-based registry
T2 - CURE-CKD
AU - Norris, Keith C.
AU - Duru, O. Kenrik
AU - Alicic, Radica Z.
AU - Daratha, Kenn B.
AU - Nicholas, Susanne B.
AU - McPherson, Sterling M.
AU - Bell, Douglas S.
AU - Shen, Jenny I.
AU - Jones, Cami R.
AU - Moin, Tannaz
AU - Waterman, Amy D.
AU - Neumiller, Joshua J.
AU - Vargas, Roberto B.
AU - Bui, Alex A.T.
AU - Mangione, Carol M.
AU - Tuttle, Katherine R.
AU - Agnew, Karen
AU - Barbosa-Leiker, Celestina
AU - Cooper, Ann
AU - Gargett, Mark
AU - Zachariah, Marianne
AU - Kim, Peter
AU - Miceli, Carol
AU - Follett, Robert W.
AU - Tacorda, Theona
AU - Ettner, Susan
AU - Elashoff, David
N1 - Publisher Copyright:
© 2019 The Author(s).
PY - 2019/11/20
Y1 - 2019/11/20
N2 - Background: Chronic kidney disease (CKD) is a global public health problem, exhibiting sharp increases in incidence, prevalence, and attributable morbidity and mortality. There is a critical need to better understand the demographics, clinical characteristics, and key risk factors for CKD; and to develop platforms for testing novel interventions to improve modifiable risk factors, particularly for the CKD patients with a rapid decline in kidney function. Methods: We describe a novel collaboration between two large healthcare systems (Providence St. Joseph Health and University of California, Los Angeles Health) supported by leadership from both institutions, which was created to develop harmonized cohorts of patients with CKD or those at increased risk for CKD (hypertension/HTN, diabetes/DM, pre-diabetes) from electronic health record data. Results: The combined repository of candidate records included more than 3.3 million patients with at least a single qualifying measure for CKD and/or at-risk for CKD. The CURE-CKD registry includes over 2.6 million patients with and/or at-risk for CKD identified by stricter guide-line based criteria using a combination of administrative encounter codes, physical examinations, laboratory values and medication use. Notably, data based on race/ethnicity and geography in part, will enable robust analyses to study traditionally disadvantaged or marginalized patients not typically included in clinical trials. Discussion: CURE-CKD project is a unique multidisciplinary collaboration between nephrologists, endocrinologists, primary care physicians with health services research skills, health economists, and those with expertise in statistics, bio-informatics and machine learning. The CURE-CKD registry uses curated observations from real-world settings across two large healthcare systems and has great potential to provide important contributions for healthcare and for improving clinical outcomes in patients with and at-risk for CKD.
AB - Background: Chronic kidney disease (CKD) is a global public health problem, exhibiting sharp increases in incidence, prevalence, and attributable morbidity and mortality. There is a critical need to better understand the demographics, clinical characteristics, and key risk factors for CKD; and to develop platforms for testing novel interventions to improve modifiable risk factors, particularly for the CKD patients with a rapid decline in kidney function. Methods: We describe a novel collaboration between two large healthcare systems (Providence St. Joseph Health and University of California, Los Angeles Health) supported by leadership from both institutions, which was created to develop harmonized cohorts of patients with CKD or those at increased risk for CKD (hypertension/HTN, diabetes/DM, pre-diabetes) from electronic health record data. Results: The combined repository of candidate records included more than 3.3 million patients with at least a single qualifying measure for CKD and/or at-risk for CKD. The CURE-CKD registry includes over 2.6 million patients with and/or at-risk for CKD identified by stricter guide-line based criteria using a combination of administrative encounter codes, physical examinations, laboratory values and medication use. Notably, data based on race/ethnicity and geography in part, will enable robust analyses to study traditionally disadvantaged or marginalized patients not typically included in clinical trials. Discussion: CURE-CKD project is a unique multidisciplinary collaboration between nephrologists, endocrinologists, primary care physicians with health services research skills, health economists, and those with expertise in statistics, bio-informatics and machine learning. The CURE-CKD registry uses curated observations from real-world settings across two large healthcare systems and has great potential to provide important contributions for healthcare and for improving clinical outcomes in patients with and at-risk for CKD.
KW - Chronic kidney disease
KW - Diabetes
KW - Electronic health records
KW - Healthcare systems
KW - Hypertension
KW - Pre-diabetes
KW - Registry
KW - Study design
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U2 - 10.1186/s12882-019-1558-9
DO - 10.1186/s12882-019-1558-9
M3 - Article
C2 - 31747918
AN - SCOPUS:85075421750
SN - 1471-2369
VL - 20
JO - BMC Nephrology
JF - BMC Nephrology
IS - 1
M1 - 416
ER -