Paratz Elizabeth Davida, Rowsell Luke, Zentner Dominica, Parsons Sarah, Morgan Natalie, Thompson Tina, James Paul, Pflaumer Andreas, Semsarian Christopher, Smith Karen, Stub Dion, La Gerche Andre
Baker Heart Research Institute - BHRI, Melbourne, Victoria, Australia.
Cardiology Department, St Vincent's Hospital, Melbourne, VIC, Australia.
Open Heart. 2020 Jan 20;7(1):e001195. doi: 10.1136/openhrt-2019-001195. eCollection 2020.
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.
心源性猝死（SCD）是一个重大的全球健康问题，在西方社会占死亡人数的20%。临床质量登记处已被证明在一系列疾病情况下可改善临床管理、减少护理差异并改善治疗结果。
识别现有的心脏骤停（CA）和SCD登记处，描述其全球覆盖范围以及数据收集和验证方法。
使用“registry cardio*”、“sudden cardiac death registry”和“cardiac arrest registry”等术语在生物医学和公共搜索引擎中进行搜索。根据预先设定的标准，将登记处分为CA、SCD登记处或“其他”（即电子登记处）。联系SCD登记处协调员获取有关登记处详细信息的同期数据。
我们的搜索策略识别出49个CA登记处、15个SCD登记处和9个其他登记处（即电子登记处）。当代CA和SCD登记处的人群覆盖范围差异很大，登记处密集集中在北美和西欧。现有的SCD登记处（n = 15）涵盖了各种年龄范围和亚人群，其中一些登记了存活患者（n = 8）和家庭成员（n = 5）。九个登记处收集了基因数据，其中大多数（n = 7）在生物样本库中提供无限期存储。
全球存在许多CA登记处，尽管人群覆盖不均衡。全面的多源监测SCD登记处数量较少，设计和维护更具挑战性。确定的挑战包括最大限度地识别病例和核实病例。
CRD42019118910。
