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. 2020 Jan 20;7(1):e001195.
doi: 10.1136/openhrt-2019-001195. eCollection 2020.

Cardiac arrest and sudden cardiac death registries: a systematic review of global coverage

Elizabeth Davida Paratz  1   2   3 , Luke Rowsell  1 , Dominica Zentner  4   5 , Sarah Parsons  6 , Natalie Morgan  6 , Tina Thompson  5 , Paul James  5   7 , Andreas Pflaumer  8   9 , Christopher Semsarian  10 , Karen Smith  11   12 , Dion Stub  3   13 , Andre La Gerche  1   2   3   4 ; Australian UCDP Registry
Affiliations

Cardiac arrest and sudden cardiac death registries: a systematic review of global coverage

Elizabeth Davida Paratz et al. Open Heart. .

Abstract

Background: Sudden cardiac death (SCD) is a major global health problem, accounting for up to 20% of deaths in Western societies. Clinical quality registries have been shown in a range of disease conditions to improve clinical management, reduce variation in care and improve outcomes.

Aim: To identify existing cardiac arrest (CA) and SCD registries, characterising global coverage and methods of data capture and validation.

Methods: Biomedical and public search engines were searched with the terms 'registry cardio*'; 'sudden cardiac death registry' and 'cardiac arrest registry'. Registries were categorised as either CA, SCD registries or 'other' according to prespecified criteria. SCD registry coordinators were contacted for contemporaneous data regarding registry details.

Results: Our search strategy identified 49 CA registries, 15 SCD registries and 9 other registries (ie, epistries). Population coverage of contemporary CA and SCD registries is highly variable with registries densely concentrated in North America and Western Europe. Existing SCD registries (n=15) cover a variety of age ranges and subpopulations, with some enrolling surviving patients (n=8) and family members (n=5). Genetic data are collected by nine registries, with the majority of these (n=7) offering indefinite storage in a biorepository.

Conclusions: Many CA registries exist globally, although with inequitable population coverage. Comprehensive multisource surveillance SCD registries are fewer in number and more challenging to design and maintain. Challenges identified include maximising case identification and case verification.

Trial registration number: CRD42019118910.

Keywords: emergency medicine; epidemiology; resuscitation; sudden cardiac death.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
Flow diagram of registry identification, selection and inclusion.
Figure2
Figure2
Current global distribution of cardiac arrest, sudden cardiac death and other registries.
Figure 3
Figure 3
Multi-source data surveillance and capture provides the optimum mechanism of case adjudication and refining case inclusion in SCD registries.
See this image and copyright information in PMC

Comment in

References

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