The role of cardiac registries in evidence-based medicine

Gitt, Anselm K.; Bueno, Héctor; Danchin, Nicolás; Fox, Kevin; Hochadel, Matthias; Kearney, Peter; Maggioni, Aldo P.; Opolski, Grzegorz; Seabra-Gomes, R; Weidinger, Franz

doi:10.1093/eurheartj/ehp596

Cited by 123 publications

(98 citation statements)

References 40 publications

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“…363 Clinical registries address some of the selection bias and are valuable resources for comparison and for assessing trends in treatment. [363][364][365][366][367] The finding of similarly high PCI rates in an unselected (SWEDEHEART/RIKS-HIA) and a selected (ACTION) registry makes the differences seen in other aspects of NSTEMI care more informative. It suggests that US procedure rates are not being driven by fee for service and that Sweden's increased emphasis on system-wide quality improvement is bearing fruit.…”

Section: Discussionmentioning

confidence: 99%

Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme

Hemingway

Feder

Denaxas

et al. 2017

Programme Grants Appl Res

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BackgroundElectronic health records (EHRs), when linked across primary and secondary care and curated for research use, have the potential to improve our understanding of care quality and outcomes.ObjectiveTo evaluate new opportunities arising from linked EHRs for improving quality of care and outcomes for patients at risk of or with coronary disease across the patient journey.DesignEpidemiological cohort, health informatics, health economics and ethnographic approaches were used.Setting230 NHS hospitals and 226 general practices in England and Wales.ParticipantsUp to 2 million initially healthy adults, 100,000 people with stable coronary artery disease (SCAD) and up to 300,000 patients with acute coronary syndrome.Main outcome measuresQuality of care, fatal and non-fatal cardiovascular disease (CVD) events.Data platform and methodsWe created a novel research platform [ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER)] based on linkage of four major sources of EHR data in primary care and national registries. We carried out 33 complementary studies within the CALIBER framework. We developed a web-based clinical decision support system (CDSS) in hospital chest pain clinics. We established a novel consented prognostic clinical cohort of SCAD patients.ResultsCALIBER was successfully established as a valid research platform based on linked EHR data in nearly 2 million adults with > 600 EHR phenotypes implemented on the web portal (seehttps://caliberresearch.org/portal). Despite national guidance, key opportunities for investigation and treatment were missed across the patient journey, resulting in a worse prognosis for patients in the UK compared with patients in health systems in other countries. Our novel, contemporary, high-resolution studies showed heterogeneous associations for CVD risk factors across CVDs. The CDSS did not alter the decision-making behaviour of clinicians in chest pain clinics. Prognostic models using real-world data validly discriminated risk of death and events, and were used in cost-effectiveness decision models.ConclusionsEmerging ‘big data’ opportunities arising from the linkage of records at different stages of a patient’s journey are vital to the generation of actionable insights into the diagnosis, risk stratification and cost-effective treatment of people at risk of, or with, CVD.Future workThe vast majority of NHS data remain inaccessible to research and this hampers efforts to improve efficiency and quality of care and to drive innovation. We propose three priority directions for further research. First, there is an urgent need to ‘unlock’ more detailed data within hospitals for the scale of the UK’s 65 million population. Second, there is a need for scaled approaches to using EHRs to design and carry out trials, and interpret the implementation of trial results. Third, large-scale, disease agnostic genetic and biological collections linked to such EHRs are required in order to deliver precision medicine and to innovate discovery.Study registrationCALIBER studies are registered as follows: study 2 – NCT01569139, study 4 – NCT02176174 and NCT01164371, study 5 – NCT01163513, studies 6 and 7 – NCT01804439, study 8 – NCT02285322, and studies 26–29 – NCT01162187. Optimising the Management of Angina is registered as Current Controlled Trials ISRCTN54381840.FundingThe National Institute for Health Research (NIHR) Programme Grants for Applied Research programme (RP-PG-0407-10314) (all 33 studies) and additional funding from the Wellcome Trust (study 1), Medical Research Council Partnership grant (study 3), Servier (study 16), NIHR Research Methods Fellowship funding (study 19) and NIHR Research for Patient Benefit (study 33).

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Section: Discussionmentioning

confidence: 99%

Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme

Hemingway

Feder

Denaxas

et al. 2017

Programme Grants Appl Res

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“…Coexisting anemia is associated with worse outcomes across the spectrum of ACS, HF, and stable CAD treated with primary percutaneous coronary intervention (PCI) or bypass surgery (CABG) [1, [16][17][18][19]. Hemoglobin level on admission in patients with acute coronary syndrome (ACS) is an independent risk factor for adverse CV events such as death, MI, and bleeding complications [4,7,8,17].…”

Section: Outcomes Among Patients With Coexisting Anemia and Coronary mentioning

confidence: 99%

Effect of anemia on clinical outcomes in patients with coronary artery disease treated with percutaneous coronary intervention

Wańha¹,

Cornwall²,

Wojakowski³

2012

pwki

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“…1 -11 The main goal of these registries is to fill the gap between probative data of randomized controlled trials and real clinical practice. 12,13 The main functions of the ACS Drs. Gridnev, Kiselev, Posnenkova, and Prokhorov took part in the manuscript preparation.…”

Section: Introductionmentioning

confidence: 99%

Objectives and Design of the Russian Acute Coronary Syndrome Registry (RusACSR)

Gridnev

Kiselev

Posnenkova

et al. 2015

Clinical Cardiology

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The Russian Acute Coronary Syndrome Registry (RusACSR) is a retrospective, continuous, nationwide, Web‐based registry of patients with acute coronary syndromes (ACS). The RusACSR is a database that uses a secure Web‐based interface for data entry by individual users. Participation in the RusACSR is voluntary. Any clinical center that provides health care to ACS patients can take part in the RusACSR. The RusACSR enrolls ACS patients who have undergone care in Russian hospitals from February 2008 to the present. Key data elements and methods of data analysis in the RusACSR are presented in this article. Up to 2015, 213 clinical centers from 36 regions of Russia had participated in the RusACSR. Currently, the database contains data on more than 250 000 ACS patients who underwent care from 2008 to 2015. Some current problems are highlighted in this article. The RusACSR is a perspective project for different epidemiologic studies in Russian ACS patients.

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The role of cardiac registries in evidence-based medicine

Cited by 123 publications

References 40 publications

Effect of anemia on clinical outcomes in patients with coronary artery disease treated with percutaneous coronary intervention

Objectives and Design of the Russian Acute Coronary Syndrome Registry (RusACSR)

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