Cardiac arrest and sudden cardiac death registries: a systematic review of global coverage. 2020

Elizabeth Davida Paratz, and Luke Rowsell, and Dominica Zentner, and Sarah Parsons, and Natalie Morgan, and Tina Thompson, and Paul James, and Andreas Pflaumer, and Christopher Semsarian, and Karen Smith, and Dion Stub, and Andre La Gerche, and
Baker Heart Research Institute - BHRI, Melbourne, Victoria, Australia.

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. To identify existing cardiac arrest (CA) and SCD registries, characterising global coverage and methods of data capture and validation. 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. 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. 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. CRD42019118910.

UI MeSH Term Description Entries
D007223 Infant A child between 1 and 23 months of age. Infants
D007231 Infant, Newborn An infant during the first 28 days after birth. Neonate,Newborns,Infants, Newborn,Neonates,Newborn,Newborn Infant,Newborn Infants
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D011379 Prognosis A prediction of the probable outcome of a disease based on a individual's condition and the usual course of the disease as seen in similar situations. Prognostic Factor,Prognostic Factors,Factor, Prognostic,Factors, Prognostic,Prognoses
D012042 Registries The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers. Parish Registers,Population Register,Parish Register,Population Registers,Register, Parish,Register, Population,Registers, Parish,Registers, Population,Registry
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D002675 Child, Preschool A child between the ages of 2 and 5. Children, Preschool,Preschool Child,Preschool Children
D005260 Female Females
D006323 Heart Arrest Cessation of heart beat or MYOCARDIAL CONTRACTION. If it is treated within a few minutes, heart arrest can be reversed in most cases to normal cardiac rhythm and effective circulation. Asystole,Cardiac Arrest,Cardiopulmonary Arrest,Arrest, Cardiac,Arrest, Cardiopulmonary,Arrest, Heart,Asystoles

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