Identification and mapping real-world data sources for heart failure, acute coronary syndrome, and atrial fibrillation

Rachel Studer, Claudio Sartini, Kiliana Suzart-Woischnik, Rumjhum Agrawal, Harshal Natani, Simrat Gill, Sara Bruce Wirta, Folkert Asselbergs, Richard Dobson, Spiros Denaxas, Dipak Kotecha

Research output: Contribution to journalArticlepeer-review

46 Downloads (Pure)

Abstract

Background: Transparent and robust real-world evidence sources are increasingly important for global health, including cardiovascular 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, 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. 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 cardiovascular data sources, providing new avenues to improve future real-world research and to achieve better patient outcomes.
Original languageEnglish
JournalCardiology
Early online date15 Nov 2021
DOIs
Publication statusE-pub ahead of print - 15 Nov 2021

Keywords

  • Real-world data
  • Real-world evidence
  • Data sources
  • Cardiovascular

Fingerprint

Dive into the research topics of 'Identification and mapping real-world data sources for heart failure, acute coronary syndrome, and atrial fibrillation'. Together they form a unique fingerprint.

Cite this