Data registries have been a huge success for U.S. structural heart programs
When transcatheter aortic valve replacement (TAVR) was first cleared by the FDA in 2012, centers adopting the technology were required to enter all their procedural data into a American College of Cardiology/Society in Thoracic Surgery (ACC/STS) National Cardiovascular Data Registry (NCDR) to make it easier for the FDA to monitor outcomes with the new technology. A decade later, that requirement still stands. In fact, it has been so successful that similar registries have been created for other new interventional and electrophysiology technologies.
The detailed quality metrics offer a clear apples-to-apples comparison with other TAVR centers so a program can track its level of success and where it may need additional training. That's not all the registry does for these centers, however. The NCDR has also turned into a form of marketing tool for many centers that share their high marks publicly to attract new patients, explained Patricia Keegan, NP, director strategic and programmatic initiatives, Emory Heart and Vascular Center. She spoke on the value ion the NCDR in a session at Transcatheter Cardiovascular Therapeutics (TCT) 2023 annual meeting meeting last fall.
The most public source of this data that patients use to shop around for the best programs is the U.S. News and World Report rankings for TAVR programs and cardiology programs. She said that public transparency and reporting of data is important for patients and their families, who may know very little about the procedure or what is involved in the metrics.
NCDR helps improve quality across structural heart programs
The NCDR Transcatheter Valve Therapy (TVT) registry now includes reporting for mitral valve and tricuspid valve procedures. The NCDR also maintains a separate registry for left atrial appendage occlusion (LAAO). Through this data, Keegan said the NCDR plays a pivotal role in assessing and improving the quality of healthcare delivery in structural heart procedures. The data also has a role in benchmarking national standards and aiding hospitals in identifying areas for improvement, helping improve transparency and accountability within healthcare institutions.
"It's important because we all have a say in it, and so one thing that has historically been an issue is not being involved in some of the decisions when it comes to equality. And so we have a lot of different registries, whether they are through ACC, the NCDR, the Get with the Guidelines program, or STS when we talk about surgical outcomes. With these registries, we are taking information from patient outcomes and looking at what we do with this data. For us, we're looking at how do we make it more transparent so that our staff knows what we're doing," Keegan explained.
She emphasized the importance of participation in registries, stating that some of them are voluntary and some are required. For programs focused on structural heart disease, like the TAVR program at Emory, being part of the registry is both beneficial and directly tied to payment. This mandatory participation ensures that the data collected are reflective of the program's performance and contribute to the ongoing assessment of its effectiveness, Keegan said.
In some states like California, this type of public reporting is mandatory, creating a scenario where patients can actively research and compare structural heart programs.
The TVT registry forms include dozens of pages of data entry for each patient case, so registration can be a for challenge for some hospitals, especially higher volume centers that may need a full-time person to file this information. Keegan addressed this concern by emphasizing the benefits derived from participating in registries, such as the ability to assess and improve patient care, leading to a sense of pride and ownership among healthcare professionals. She said vendors could also potentially make an impact by helping to automate the process to pull data into the reporting fields automatically.