Clinical disease registries in acute myocardial infarction

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.