Abstract
BackgroundSudden 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.AimTo identify existing cardiac arrest (CA) and SCD registries, characterising global coverage and methods of data capture and validation.MethodsBiomedical 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.ResultsOur 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.ConclusionsMany 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 numberCRD42019118910.
Funder
National Heart Foundation of Australia
National Health and Medical Research Council
Royal Australian College of Physicians
Subject
Cardiology and Cardiovascular Medicine
Reference42 articles.
1. Epidemiology of sudden cardiac death: global and regional perspectives;Wong;Heart Lung Circ,2019
2. Sudden cardiac death in the young: the molecular autopsy and a practical approach to surviving relatives
3. Gliklich RDN , Center OD . Registries for Evaluating Patient Outcomes: A User’s Guide. Rockville, Maryland, 2010.
4. ACSQHC . Economic evaluation of clinical quality registries: final report. Sydney, 2016.
5. Call for a sudden cardiac death registry: should reporting of sudden cardiac death be mandatory?;Campbell;Pediatr Cardiol,2012
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