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

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.

Incidence of recreational sports-related sudden cardiac arrest in participants over age 12 in a general African population

“…Sudden cardiac death (SCD) remains a major public health problem claiming up to 20% of deaths in Western societies. 1 2 Sudden cardiac arrest (SCA) is the leading medical cause of death in athletes. 3 The incidence of sports-related sudden cardiac arrest (SrSCA) in several studies has ranged from 0.13 to 13.0 per 100 000 person-years (PY) depending on the methodology, accuracy and population studied, according to a meta-analysis of 21 studies with 1994 SrSCA over 437 156 081 PY.…”

The Hearts in Rhythm Organization: A Canadian National Cardiogenetics Network

“…Although there are many international registries collecting data on the similar patient populations, the majority focus only on participants and family members of those who have experienced a cardiac arrest or sudden death (eg, Danish Cardiac Arrest registry), or focus on patients with a single disease seen at large tertiary referral centres (eg, International LQTS Registry). 31 Both of these registry designs may represent a more severely affected cohort than the general population. By broadening the inclusion criteria of the National HiRO Registry to include multiple phenotypes, this registry will be better equipped to take a genotype-first approach when designing studies, providing researchers the opportunity to identify the different phenotypes present in patients with similar genetic changes, which is a current limitation in disease-specific registries.…”

Circular RNAs in Sudden Cardiac Death Related Diseases: Novel Biomarker for Clinical and Forensic Diagnosis

“…Cardiovascular disease (CVD) is the most lethal noncommunicable disease, it globally being the greatest contributor to high morbidity and mortality [ 1 , 2 , 3 ]. Irregular cardiac activities restrict the blood supply, leading to sudden unexpected death caused by loss of cardiac function, known as sudden cardiac death (SCD) [ 4 ].…”