Developments in procedural and disease registries: a focus on coronary artery disease

Registries are becoming an increasingly important component of clinical practice through the collection of clinical data including outcomes on representative populations of patients. An understanding of registry structure and function is important for practicing cardiovascular clinicians. Clinical populations may be identified on the basis of procedures they undergo (procedural registries), or their clinical condition (disease registries). Registries provide opportunities to document and improve quality of care. They also provide insights into the nature of disease and the benefit of treatments in subgroups of patients, and poorly resourced environments, that are not well represented in randomized clinical trials.

To maximize the value of registries, minimum quality criteria must be met. These include clear definitions of the included populations, an unbiased inclusive patient sampling strategy, high quality data with processes to ensure this, a clear governance structure, and adherence to relevant ethical and privacy guidelines. Statistical techniques adjusting for the nonrandomized nature of treatment allocations continue to evolve. There is increasing potential for randomized controlled trials to be conducted within registry cohorts. By using the same clinical data for both the registry and the trial, and enrolling unselected patients, this cost-effective approach provides information on the effectiveness of care in the pragmatic clinical environment.

The potential of these rich clinical data sources is yet to be realized. Future developments that will enhance their value include improved efficiencies by integration with the electronic medical record, more widespread crosstalk between high quality registries facilitated by data linkage, simplification of ethical processes, and development of sustainable funding models.