TY - JOUR
T1 - Characteristics and Quality of National Cardiac Registries
T2 - A Systematic Review
AU - Dawson, Luke P.
AU - Biswas, Sinjini
AU - Lefkovits, Jeffrey
AU - Stub, Dion
AU - Burchill, Luke
AU - Evans, Sue M.
AU - Reid, Christopher
AU - Eccleston, David
N1 - Funding Information:
L.P. Dawson is supported by National Health and Medical Research Council (NHMRC) and National Heart Foundation postgraduate scholarships. Dr Reid is supported by a NHMRC Principal Research Fellowship (reference no. 1136972). Associate Professor Dr Stub’s work is supported by a National Heart Foundation Fellowship (reference no. 101908). The other authors report no conflicts.
Publisher Copyright:
© 2021 Lippincott Williams and Wilkins. All rights reserved.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/9
Y1 - 2021/9
N2 - Background: National cardiac registries are increasingly used for informing health policy, improving the quality and cost-effectiveness of patient care, clinical research, and monitoring the safety of novel treatments. However, the quality of registries is variable. We aimed to assess the characteristics and quality of national cardiac registries across all subspecialties of cardiac care. Methods: Publications relating to national cardiac registries across six cardiac subspecialty domains were identified by searching MEDLINE and the Google advanced search function with 26 438 citations and 4812 full-text articles reviewed. Results: A total of 155 registries, representing 49 countries, were included in the study. Of these, 45 related to coronary disease or percutaneous coronary intervention, 28 related to devices, arrhythmia, and electrophysiology, 24 related to heart failure, transplant, and mechanical support, 21 related to structural heart disease, 21 related to congenital heart disease, and 16 related to cardiac surgery. Enrollment was procedure-based in 60% and disease-based in 40%. A total of 73.10 million patients were estimated to have been enrolled in cardiac registries. Quality scoring was performed using a validated registry grading system, with registries performing best in the use of explicit variable definitions and worst in assessment of data reliability. Higher quality scores were associated with government funding, mandated enrollment, linkage to other registries, and outcome risk adjustment. Quality scores and number of registries within a country were positively correlated with each other and with measures of national economic output, health expenditure, and urbanization. Conclusions: There has been remarkable growth in the uptake of national cardiac registries across the last few decades. However, the quality of processes used to ensure data completeness and accuracy remain variable and few countries have integrated registries covering multiple subspecialty domains. Clinicians, funders, and health policymakers should be encouraged to focus on the range, quality, and integration of these registries.
AB - Background: National cardiac registries are increasingly used for informing health policy, improving the quality and cost-effectiveness of patient care, clinical research, and monitoring the safety of novel treatments. However, the quality of registries is variable. We aimed to assess the characteristics and quality of national cardiac registries across all subspecialties of cardiac care. Methods: Publications relating to national cardiac registries across six cardiac subspecialty domains were identified by searching MEDLINE and the Google advanced search function with 26 438 citations and 4812 full-text articles reviewed. Results: A total of 155 registries, representing 49 countries, were included in the study. Of these, 45 related to coronary disease or percutaneous coronary intervention, 28 related to devices, arrhythmia, and electrophysiology, 24 related to heart failure, transplant, and mechanical support, 21 related to structural heart disease, 21 related to congenital heart disease, and 16 related to cardiac surgery. Enrollment was procedure-based in 60% and disease-based in 40%. A total of 73.10 million patients were estimated to have been enrolled in cardiac registries. Quality scoring was performed using a validated registry grading system, with registries performing best in the use of explicit variable definitions and worst in assessment of data reliability. Higher quality scores were associated with government funding, mandated enrollment, linkage to other registries, and outcome risk adjustment. Quality scores and number of registries within a country were positively correlated with each other and with measures of national economic output, health expenditure, and urbanization. Conclusions: There has been remarkable growth in the uptake of national cardiac registries across the last few decades. However, the quality of processes used to ensure data completeness and accuracy remain variable and few countries have integrated registries covering multiple subspecialty domains. Clinicians, funders, and health policymakers should be encouraged to focus on the range, quality, and integration of these registries.
KW - atrial fibrillation
KW - coronary artery disease
KW - percutaneous coronary intervention
KW - quality of care
KW - registries
UR - http://www.scopus.com/inward/record.url?scp=85116095312&partnerID=8YFLogxK
U2 - 10.1161/CIRCOUTCOMES.121.007963
DO - 10.1161/CIRCOUTCOMES.121.007963
M3 - Review Article
C2 - 34517724
AN - SCOPUS:85116095312
SN - 1941-7713
VL - 14
JO - Circulation: Cardiovascular Quality and Outcomes
JF - Circulation: Cardiovascular Quality and Outcomes
IS - 9
M1 - e007963
ER -