Routine clinical care data from thirteen cardiac outpatient clinics: design of the Cardiology Centers of the Netherlands (CCN) database

BMC Cardiovascular Disorders

G. Aernout Somsen¹  Igor I. Tulevski¹  Leonard Hofstra²  Folkert W. Asselbergs³  N. Charlotte Onland-Moret⁴  Sophie H. Bots⁵  Hester M. den Ruijter⁵  Klaske R. Siegersma⁶ 

[1]Cardiology Centers of the Netherlands, Amsterdam, The Netherlands

[2]Department of Cardiology, Amsterdam University Medical Centres, location VUmc, Amsterdam, The Netherlands

[3]Cardiology Centers of the Netherlands, Amsterdam, The Netherlands

[4]Department of Cardiology, Division Heart and Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands

[5]Institute of Cardiovascular Science, Faculty of Population Health Sciences, University College London, London, UK

[6]Health Data Research UK and Institute of Health Informatics, University College London, London, UK

[7]Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands

[8]Laboratory of Experimental Cardiology, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands

[9]Laboratory of Experimental Cardiology, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands

[10]Department of Cardiology, Amsterdam University Medical Centres, location VUmc, Amsterdam, The Netherlands

关键词: Clinical care data;    Cardiovascular care;    Prevention;    Big data;   

DOI  :  10.1186/s12872-021-02020-7

来源: Springer

【 摘 要 】

BackgroundDespite the increasing availability of clinical data due to the digitalisation of healthcare systems, data often remain inaccessible due to the diversity of data collection systems. In the Netherlands, Cardiology Centers of the Netherlands (CCN) introduced “one-stop shop” diagnostic clinics for patients suspected of cardiac disease by their general practitioner. All CCN clinics use the same data collection system and standardised protocol, creating a large regular care database. This database can be used to describe referral practices, evaluate risk factors for cardiovascular disease (CVD) in important patient subgroups, and develop prediction models for use in daily care.Construction and contentThe current database contains data on all patients who underwent a cardiac workup in one of the 13 CCN clinics between 2007 and February 2018 (n = 109,151, 51.9% women). Data were pseudonymised and contain information on anthropometrics, cardiac symptoms, risk factors, comorbidities, cardiovascular and family history, standard blood laboratory measurements, transthoracic echocardiography, electrocardiography in rest and during exercise, and medication use. Clinical follow-up is based on medical need and consisted of either a repeat visit at CCN (43.8%) or referral for an external procedure in a hospital (16.5%). Passive follow-up via linkage to national mortality registers is available for 95% of the database.Utility and discussionThe CCN database provides a strong base for research into historically underrepresented patient groups due to the large number of patients and the lack of in- and exclusion criteria. It also enables the development of artificial intelligence-based decision support tools. Its contemporary nature allows for comparison of daily care with the current guidelines and protocols. Missing data is an inherent limitation, as the cardiologist could deviate from standardised protocols when clinically indicated.ConclusionThe CCN database offers the opportunity to conduct research in a unique population referred from the general practitioner to the cardiologist for diagnostic workup. This, in combination with its large size, the representation of historically underrepresented patient groups and contemporary nature makes it a valuable tool for expanding our knowledge of cardiovascular diseases.Trial registration: Not applicable.

【 授权许可】

CC BY