title: Uniform data collection in routine clinical practice in cardiovascular patients for optimal care, quality control and research: The Utrecht Cardiovascular Cohort.
abstract: Background Cardiovascular disease remains the major contributor to morbidity and mortality. In routine care for patients with an elevated cardiovascular risk or with symptomatic cardiovascular disease information is mostly collected in an unstructured manner, making the data of limited use for structural feedback, quality control, learning and scientific research. Objective The Utrecht Cardiovascular Cohort (UCC) initiative aims to create an infrastructure for uniform registration of cardiovascular information in routine clinical practice for patients referred for cardiovascular care at the University Medical Center Utrecht, the Netherlands. This infrastructure will promote optimal care according to guidelines, continuous quality control in a learning healthcare system and creation of a research database. Methods The UCC comprises three parts. UCC-1 comprises enrolment of all eligible cardiovascular patients in whom the same information will be collected, based on the Dutch cardiovascular management guideline. A sample of UCC-1 will be invited for UCC-2. UCC-2 involves an enrichment through extensive clinical measurements with emphasis on heart failure, cerebral ischaemia, arterial aneurysms, diabetes mellitus and elevated blood pressure. UCC-3 comprises on-top studies, with in-depth measurements in smaller groups of participants typically based on dedicated project grants. All participants are followed up for morbidity and mortality through linkage with national registries. Conclusion In a multidisciplinary effort with physicians, patients and researchers the UCC sets a benchmark for a learning cardiovascular healthcare system. UCC offers an invaluable resource for future high quality care as well as for first-class research for investigators.
authors.affiliation: 1 Department of Cardiology, Division Heart and Lungs, University Medical Center Utrecht, the Netherlands.|2 Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands.|3 Durrer Center for Cardiogenetic Research, ICIN-Netherlands Heart Institute, the Netherlands.|4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Folkert W
authors.initials: FW
authors.lastname: Asselbergs
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|5 Department of Vascular Medicine, University Medical Center Utrecht, the Netherlands.
authors.forename: Frank Lj
authors.initials: FL
authors.lastname: Visseren
authors.affiliation: 2 Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands.|4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Michiel L
authors.initials: ML
authors.lastname: Bots
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|6 Department of Vascular Surgery, University Medical Center Utrecht, the Netherlands.
authors.forename: Gert J
authors.initials: GJ
authors.lastname: de Borst
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|7 Department of Cardio-Thoracic Surgery, University Medical Center Utrecht, the Netherlands.
authors.forename: Marc P
authors.initials: MP
authors.lastname: Buijsrogge
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|8 Department of Anaesthesiology and Intensive Care, University Medical Center Utrecht, the Netherlands.
authors.forename: Jan M
authors.initials: JM
authors.lastname: Dieleman
authors.affiliation: 2 Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands.|4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Baukje Gf
authors.initials: BG
authors.lastname: van Dinther
authors.affiliation: 1 Department of Cardiology, Division Heart and Lungs, University Medical Center Utrecht, the Netherlands.|4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Pieter A
authors.initials: PA
authors.lastname: Doevendans
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|9 Experimental Cardiology Laboratory, University Medical Center Utrecht, the Netherlands.|10 Department of Clinical Chemistry and Haematology, University Medical Center Utrecht, the Netherlands.
authors.forename: Imo E
authors.initials: IE
authors.lastname: Hoefer
authors.affiliation: 2 Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands.|4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Monika
authors.initials: M
authors.lastname: Hollander
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|11 Department of Radiology, University Medical Center Utrecht, the Netherlands.
authors.forename: Pim A
authors.initials: PA
authors.lastname: de Jong
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|12 Department of Obstetrics, University Medical Center Utrecht, the Netherlands.
authors.forename: Steven V
authors.initials: SV
authors.lastname: Koenen
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|9 Experimental Cardiology Laboratory, University Medical Center Utrecht, the Netherlands.
authors.forename: Gerard
authors.initials: G
authors.lastname: Pasterkamp
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|13 Department of Neurology and Neurosurgery, University Medical Center Utrecht, the Netherlands.
authors.forename: Ynte M
authors.initials: YM
authors.lastname: Ruigrok
authors.affiliation: 2 Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands.|4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Yvonne T
authors.initials: YT
authors.lastname: van der Schouw
authors.affiliation: 4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.|14 Department of Nephrology and Hypertension, University Medical Center Utrecht, the Netherlands.
authors.forename: Marianne C
authors.initials: MC
authors.lastname: Verhaar
authors.affiliation: 2 Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands.|4 Center for Circulatory Health, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Diederick E
authors.initials: DE
authors.lastname: Grobbee
mesh_terms: D019985:Benchmarking / Q000592:standards; D002309:Cardiology / Q000592:standards*; D002318:Cardiovascular Diseases / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D015897:Comorbidity; D003299:Cooperative Behavior; D003625:Data Collection / Q000592:standards*; D006801:Humans; D033183:Interdisciplinary Communication; D009426:Netherlands / Q000453:epidemiology; D017410:Practice Guidelines as Topic / Q000592:standards; D011446:Prospective Studies; D058996:Quality Improvement / Q000592:standards*; D019984:Quality Indicators, Health Care / Q000592:standards*; D012042:Registries / Q000592:standards*; D012307:Risk Factors; D013997:Time Factors; D016896:Treatment Outcome
keywords: Cardiovascular; cohort; healthcare learning; quality control; treatment; trial