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. 2022;147(1):98-106.
doi: 10.1159/000520674. Epub 2021 Nov 15.

Identification and Mapping Real-World Data Sources for Heart Failure, Acute Coronary Syndrome, and Atrial Fibrillation

Rachel Studer  1 , Claudio Sartini  2 , Kiliana Suzart-Woischnik  2 , Rumjhum Agrawal  3 , Harshul Natani  4 , Simrat K Gill  5 , Sara Bruce Wirta  1 , Folkert W Asselbergs  6   7 , Richard Dobson  6 , Spiros Denaxas  6 , Dipak Kotecha  5   7   8
Affiliations

Identification and Mapping Real-World Data Sources for Heart Failure, Acute Coronary Syndrome, and Atrial Fibrillation

Rachel Studer et al. Cardiology. 2022.

Abstract

Background: Transparent and robust real-world evidence sources are increasingly important for global health, including cardiovascular (CV) diseases. We aimed to identify global real-world data (RWD) sources for heart failure (HF), acute coronary syndrome (ACS), and atrial fibrillation (AF).

Methods: We conducted a systematic review of publications with RWD pertaining to HF, ACS, and AF (2010-2018), generating a list of unique data sources. Metadata were extracted based on the source type (e.g., electronic health records, genomics, and clinical data), study design, population size, clinical characteristics, follow-up duration, outcomes, and assessment of data availability for future studies and linkage.

Results: Overall, 11,889 publications were retrieved for HF, 10,729 for ACS, and 6,262 for AF. From these, 322 (HF), 287 (ACS), and 220 (AF) data sources were selected for detailed review. The majority of data sources had near complete data on demographic variables (HF: 94%, ACS: 99%, and AF: 100%) and considerable data on comorbidities (HF: 77%, ACS: 93%, and AF: 97%). The least reported data categories were drug codes (HF, ACS, and AF: 10%) and caregiver involvement (HF: 6%, ACS: 1%, and AF: 1%). Only a minority of data sources provided information on access to data for other researchers (11%) or whether data could be linked to other data sources to maximize clinical impact (20%). The list and metadata for the RWD sources are publicly available at www.escardio.org/bigdata.

Conclusions: This review has created a comprehensive resource of CV data sources, providing new avenues to improve future real-world research and to achieve better patient outcomes.

Keywords: Cardiovascular; Data sources; Real-world data; Real-world evidence.

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Conflict of interest statement

Prof. Kotecha reports, outside of this study, grants from the National Institute for Health Research (NIHR CDF-2015-08-074 RATE-AF; NIHR HTA-130280 DaRe2THINK; NIHR EME-132974 D2T-NV), the British Heart Foundation (PG/17/55/33087 and AA/18/2/34218), EU/EFPIA IMI (BigData@Heart 116074), the European Society of Cardiology supported by educational grants from Boehringer Ingelheim/BMS-Pfizer Alliance/Bayer/Daiichi Sankyo/Boston Scientific, the NIHR/the University of Oxford Biomedical Research Centre, and British Heart Foundation/the University of Birmingham Accelerator Award (STEEER-AF NCT04396418), Amomed Pharma, and IRCCS San Raffaele/Menarini (beta-blockers in Heart Failure Collaborative Group NCT0083244), in addition to personal fees from Bayer (Advisory Board), AtriCure (Speaker fees), Protherics Medicines Development (Advisory Board), and Myokardia (Advisory Board). Prof. Kotecha is one of the associate editors to Cardiology. Dr. Sartini, Dr. Agrawal, Dr. Natani, Prof. Denaxas, Prof. Asselbergs, and Prof. Dobson have nothing to disclose. Dr. Gill reports funding through the BigData@Heart IMI, grant No. 116074. Dr. Suzart-Woischnik reports personal fees from Bayer AG, during the conduct of the study, and other from Bayer AG, outside the submitted work. Dr. Wirta reports other from Novartis, during the conduct of the study. Dr. Studer reports personal fees from Novartis Pharmaceuticals, during the conduct of the study, and other from Novartis Pharmaceuticals, outside the submitted work.

Figures

Fig. 1
Fig. 1
Geographical distribution of HF data sources. Global HF data source distribution, with darker shades of colour representing more data sources in each of the presented regions. HF, heart failure; LaCan, Latin America/Canada; APMA, Asia-Pacific, Middle East, and Africa; USA, United States of America.
Fig. 2
Fig. 2
Top 5 data sources as per count of publications. Data sources with the highest number of publications during the search period of this review. On the right, the possibility to access or link these data sources is presented. ACTION-GTWG, Acute Coronary Treatment and Intervention Outcomes Network Registry-Get With The Guidelines; GRACE/GRACE 2, Global Registry of Acute Coronary Events/Global Registry of Acute Coronary Events 2; HF, heart failure; ACS, acute coronary syndrome; AF, atrial fibrillation; Gulf CARE, Gulf aCute heArt failuRe rEgistry; SWEDEHEART, Swedish Web-System for Enhancement and Development of Evidence-Based Care in Heart Disease Evaluated According to Recommended Therapies; EORP, EUR Observational Research Programme.
Fig. 3
Fig. 3
Geographical distribution of ACS data sources. Global ACS data source distribution, with darker shades of colour representing more data sources in each of the presented regions. ACS, acute coronary syndrome; LaCan, Latin America/Canada; APMA, Asia-Pacific, Middle East, and Africa; USA, United States of America.
Fig. 4
Fig. 4
Distribution as per type of data sources. Data sources mapped in this review are categorized broadly into 6 different categories, comprising observational studies, registries, surveys, administrative databases, claims databases, and others. Observational studies include cohort studies, cross-sectional studies, prospective studies, retrospective studies, longitudinal studies, and population-based studies, as defined by the authors of the individual publications. HF, heart failure; ACS, acute coronary syndrome; AF, atrial fibrillation.
Fig. 5
Fig. 5
Geographical distribution of AF data sources. Global AF data source distribution, with darker shades of colour representing more data sources in each of the presented regions. AF, atrial fibrillation; LaCan, Latin America/Canada; APMA, Asia-Pacific, Middle East, and Africa; USA, United States of America.
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