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

doi:10.1136/openhrt-2019-001195

. 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 Rowsell¹, Dominica Zentner^{4

5}, Sarah Parsons⁶, Natalie Morgan⁶, Tina Thompson⁵, Paul James^{5

7}, Andreas Pflaumer^{8

9}, Christopher Semsarian¹⁰, Karen Smith^{11

12}, Dion Stub^{3

13}, Andre La Gerche^{1

2

3

4}; Australian UCDP Registry

Affiliations

¹ Baker Heart Research Institute - BHRI, Melbourne, Victoria, Australia.
² Cardiology Department, St Vincent's Hospital, Melbourne, VIC, Australia.
³ Cardiology, The Alfred Hospital, Melbourne, VIC, Australia.
⁴ Department of Medicine, University of Melbourne, Melbourne, Victoria, Australia.
⁵ Department of Cardiology, Royal Melbourne Hospital, Melbourne, Victoria, Australia.
⁶ Victorian Institute of Forensic Medicine, Southbank, Victoria, Australia.
⁷ Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
⁸ Department of Cardiology, Royal Childrens Hospital Melbourne, Parkville, Victoria, Australia.
⁹ Murdoch Children's Research Institute, Melbourne, VIC, Australia.
¹⁰ Centenary Institute, Sydney, New South Wales, Australia.
¹¹ Research & Evaluation, Ambulance Victoria, Blackburn North, Victoria, Australia.
¹² Community Emergency Health & Paramedic Practice, Monash University, Melbourne, VIC, Australia.
¹³ Public Health & Preventive Medicine, Monash University, Melbourne, VIC, Australia.

PMID: 32076566
PMCID: PMC6999684
DOI: 10.1136/openhrt-2019-001195

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

Elizabeth Davida Paratz et al. Open Heart. 2020.

. 2020 Jan 20;7(1):e001195.

doi: 10.1136/openhrt-2019-001195. eCollection 2020.

Authors

Affiliations

¹ Baker Heart Research Institute - BHRI, Melbourne, Victoria, Australia.
² Cardiology Department, St Vincent's Hospital, Melbourne, VIC, Australia.
³ Cardiology, The Alfred Hospital, Melbourne, VIC, Australia.
⁴ Department of Medicine, University of Melbourne, Melbourne, Victoria, Australia.
⁵ Department of Cardiology, Royal Melbourne Hospital, Melbourne, Victoria, Australia.
⁶ Victorian Institute of Forensic Medicine, Southbank, Victoria, Australia.
⁷ Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
⁸ Department of Cardiology, Royal Childrens Hospital Melbourne, Parkville, Victoria, Australia.
⁹ Murdoch Children's Research Institute, Melbourne, VIC, Australia.
¹⁰ Centenary Institute, Sydney, New South Wales, Australia.
¹¹ Research & Evaluation, Ambulance Victoria, Blackburn North, Victoria, Australia.
¹² Community Emergency Health & Paramedic Practice, Monash University, Melbourne, VIC, Australia.
¹³ Public Health & Preventive Medicine, Monash University, Melbourne, VIC, Australia.

PMID: 32076566
PMCID: PMC6999684
DOI: 10.1136/openhrt-2019-001195

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**
Flow diagram of registry identification, selection and inclusion.

**Figure2**
Current global distribution of cardiac arrest, sudden cardiac death and other registries.

**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

The autopsy is still valuable: National registries and promoting autopsy after sudden cardiac death.
Sheppard MN. Sheppard MN. Heart Rhythm. 2024 May;21(5):684-685. doi: 10.1016/j.hrthm.2024.01.037. Epub 2024 Jan 26. Heart Rhythm. 2024. PMID: 38280623 No abstract available.

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References

1. Wong CX, Brown A, Lau DH, et al. . Epidemiology of sudden cardiac death: global and regional perspectives. Heart Lung Circ 2019;28:6–14. 10.1016/j.hlc.2018.08.026 - DOI - PubMed
1. Semsarian C, Ingles J, Wilde AAM. Sudden cardiac death in the young: the molecular autopsy and a practical approach to surviving relatives. Eur Heart J 2015;36:1290–6. 10.1093/eurheartj/ehv063 - DOI - PubMed
1. Gliklich RDN, Center OD. Registries for Evaluating Patient Outcomes: A User’s Guide. Rockville, Maryland, 2010.
1. ACSQHC Economic evaluation of clinical quality registries: final report. Sydney, 2016.
1. Campbell RM, Berger S, Ackerman MJ, et al. . Call for a sudden cardiac death registry: should reporting of sudden cardiac death be mandatory? Pediatr Cardiol 2012;33:471–3. 10.1007/s00246-011-0085-7 - DOI - PubMed

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[1] Wong CX, Brown A, Lau DH, et al. . Epidemiology of sudden cardiac death: global and regional perspectives. Heart Lung Circ 2019;28:6–14. 10.1016/j.hlc.2018.08.026 - DOI - PubMed

[2] Wong CX, Brown A, Lau DH, et al. . Epidemiology of sudden cardiac death: global and regional perspectives. Heart Lung Circ 2019;28:6–14. 10.1016/j.hlc.2018.08.026 - DOI - PubMed

[3] Semsarian C, Ingles J, Wilde AAM. Sudden cardiac death in the young: the molecular autopsy and a practical approach to surviving relatives. Eur Heart J 2015;36:1290–6. 10.1093/eurheartj/ehv063 - DOI - PubMed

[4] Semsarian C, Ingles J, Wilde AAM. Sudden cardiac death in the young: the molecular autopsy and a practical approach to surviving relatives. Eur Heart J 2015;36:1290–6. 10.1093/eurheartj/ehv063 - DOI - PubMed

[5] Gliklich RDN, Center OD. Registries for Evaluating Patient Outcomes: A User’s Guide. Rockville, Maryland, 2010.

[6] Gliklich RDN, Center OD. Registries for Evaluating Patient Outcomes: A User’s Guide. Rockville, Maryland, 2010.

[7] ACSQHC Economic evaluation of clinical quality registries: final report. Sydney, 2016.

[8] ACSQHC Economic evaluation of clinical quality registries: final report. Sydney, 2016.

[9] Campbell RM, Berger S, Ackerman MJ, et al. . Call for a sudden cardiac death registry: should reporting of sudden cardiac death be mandatory? Pediatr Cardiol 2012;33:471–3. 10.1007/s00246-011-0085-7 - DOI - PubMed

[10] Campbell RM, Berger S, Ackerman MJ, et al. . Call for a sudden cardiac death registry: should reporting of sudden cardiac death be mandatory? Pediatr Cardiol 2012;33:471–3. 10.1007/s00246-011-0085-7 - DOI - PubMed

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

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

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