Clinical disease registries in acute myocardial infarction

Table 1 Examples of key or historic exemplar registries of myocardial infarction

Registry/author	First publication year	Location	Setting	Key outcome
White[8]	1926	United States	Hospital	Prognosis of MI
Killip et al[12]	1967	United States	Hospital	Importance of coronary care unit
Tower Hamlets coronary project[14]	1972	United Kingdom	Community	Community based treatment and outcomes of MI
MONICA Project[23]	1987	Global	Various	Geographical variation, mortality and epidemiological trends
Second National Registry of Myocardial Infarction[24]	2000	United States	Hospital	Importance of door to balloon time in angioplasty
GRACE[25]	2002	Global	Hospital	Risk stratification in acute MI
EuroHeart Survey[26]	2002	European	Hospital	Quality improvement and assurance
MINAP[27]	2004	United Kingdom	Hospital	Epidemiology and quality improvement

MI: Myocardial infarction; MINAP: Myocardial Ischaemia National Audit Project; GRACE: Global Registry of Acute Coronary Events.

Table 2 Some key attributes of good registry design

Attributes of a good registry	Practical aspects
Standardised data collection and definitions	Pre-project agreement of common data definitions (e.g., use of the Cardiology Audit and Registration Data standards[56]) and, where possible, standardised data collecting techniques
Rapid data collection	Computer web based data collection allowing rapid data accrual and transmission; agreed timeliness of data entry
Case ascertainment/data completeness	Built in data checking during submission; regular data validation exercises (e.g., the NCDR Data Quality Program[57]); comparison of case numbers with some other measure of unit activity; regular audit of participating sites to identify areas for improvement; explicit definition of participation in the registry and of a minimum dataset for each record; linkage to other complementary dataset[58]
Sequential enrolment	Allows for representative data without cherry-picking
Appointment of key stakeholders to a formal Steering Committee	Eeffective coordination of registry with oversight to share good practice and important results; guarantee analyses; clinical leadership and endorsement by professional bodies; regular revisions of the dataset reflect changes in practice
Random multi-site collection or mandated participation	Reduces the risk of population or site bias (as is common with RCTs in large academic city centres); enables comparisons between sites
Appropriate ethical considerations	Addresses both legal and ethical issues of patient consent; confidentiality; anonymity; data linkage (see below)
Clear and comprehensive result presentation	Clear and full results with meaningful and appropriate conclusions that reflect the findings and are presented in a way the target audience understands (e.g., funnel plots); easy access to data and reports; clear explanations of any statistical adjustments
Transparent study background and funding	Prospective declarations of any issues

RCTs: Randomised control trials.

Table 3 Advantages and disadvantages of common registry types

Registry type	Benefits	Negatives
Academic	Limited external pressures for study; more flexibility in developing the dataset; lends itself to research; collaboration with many academic institutions and with Professional Bodies	Access to data provided by external sites may be limited; potentially limited funding; danger of “mission creep”-increasing data required; participating clinicians may become divorced from the academic group; difficult to enforce participation
Insurance	Ready access to data through billing information; large amounts of data held; potential for internal data linkage; large populations to study; excellent case ascertainment	Inability to expand dataset outside that determined by insurance company/HMO; difficult to influence/alter datafield definitions; full access to data may not be available due to commercial sensitivity
Industry sponsored	Well-funded; support for training of data collectors and encouragement of data entry; often based on access to new treatments	Limited sites; confidentiality clauses may restrict dissemination of findings; not all data widely available; may have strict patient selection (restricted to those receiving particular intervention); often time limited; less direct clinician control
Government	National “reach”; can promote and mandate high levels of participation and data collection; collaboration between multiple agencies; large population for study	Limited sense of clinical ownership

HMO: Health maintenance organization.