The ESC Congress for the first time is having two sessions dedicated to clinical registries in order to highlight the growing number of innovative registries, the data they collect and the conclusions that can be drawn from this data. The sessions focus on “Risk and Treatment Reality” and “Interventions and Devices” and showcase registries from France, Italy and more.

The prominent treatment of the registry data trials at ESC Congress 2011 is a testament to their growing importance. Registry research is unique because it uses real-world data. The patients included in the registry are not chosen because they have limited comorbidities or fit a certain profile, like in clinical trials, but are included simply because they are a patient at a participating hospital. What this means is that we can see what the effects of certain treatments are on patients who may never qualify for a clinical trial. The results are a better understanding of adverse outcomes and better treatment protocols. The ACC frequently requests for FDA to require new drug and device manufacturers to conduct post-market approval studies through registries to ensure that the new drug/device doesn’t have any adverse events not caught in the clinical trials.

Of course, that’s not to say that registries aren’t without limitations. Currently, it’s challenging to connect care between the outpatient and inpatient settings because the U.S. will not implement a unique patient identifier system that could connect a patient’s progress in the hospital to the ambulatory setting and, in some cases, back to the hospital. We’ll need to find a way to work around this. With the growing emphasis on reducing readmissions, hospitals will need to have a better understanding of why and which types of patients are most frequently readmitted. Registries should be able to help fill this gap.

ACC’s registries suite, NCDR (National Cardiovascular Data Registry), has experienced a landmark year in terms of the science researchers have produced. The following studies have been some of the most interesting:

1. Non–Evidence-Based ICD Implantations in the United States (JAMA, 305;1). Researchers found that ICD implantations were not in accordance with practice guidelines in 20+% of patients, most commonly because of newly diagnosed heart failure or an MI within 40 days.
   
   
2. Patterns and Intensity of Medical Therapy in Patients Undergoing PCI (JAMA, 305;18). The authors conclude that optimal medical therapy is underutilized in patients with stable CAD.
   
   
3. Association of Door-In to Door-Out Time with Reperfusion Delays and Outcomes Among Patients for Primary PCI (JAMA, 305;24). Study showing improvement is needed in the treatment of heart attack patients who require transfer to another hospital for primary PCI).
   
   
4. Appropriateness of Percutaneous Coronary Intervention (JAMA, 306;1): This study concluded that although the majority of patients are appropriately selected for PCI procedures, there are opportunities for improvement, especially in the non-emergency setting.
   
   
5. Hospital Variability in the Rate of Finding Obstructive Coronary Artery Disease at Elective, Diagnostic Coronary Angiography (JACC, 58;8). Former ACC Prez Pam Douglas, MACC, et al., find that hospitals vary greatly when it comes to the rate at which obstructive CAD is found in patients without known heart disease undergoing elective diagnostic coronary angiography or catheterization.

These are just five of the hundreds of studies using NCDR data that have been published over the registries’ 14-year history. We may not always like what the studies find, but it’s the measurement that pushes cardiology as a profession to move forward and to find ways to more consistently implement best practices and guidelines. By measuring patient care in an appropriate and actionable way, registries bring to light the invaluable improvements being made by physicians and care teams.

I commend ESC for bringing registry data to the forefront of their meeting. I think we’ll see more and more about registry data in the future, as it addresses some of the gaps left by clinical trial data.