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Meet the Mother of All Patient Registries

Cheryl Clark, for HealthLeaders Media, July 11, 2013

The European Society of Cardiology's CARDS study (Cardiology Audit and Registration Data Standards) defines bleeding during a hospital stay as an event in which the patient's condition "required close monitoring and/or specific treatment, e.g. transfusion of blood or blood products."

But the American College of Cardiology's National Cardiovascular Data Registry of  Percutaneous Coronary Intervention (PCI) defines bleeding during a hospital stay as a "suspected or confirmed bleeding event" that was associated with a hemoglobin drop of 3 g/DL or a transfusion of whole blood or packed red cells.

And different organizations use different biomarker thresholds to define a heart attack after a PCI. Some registries measure outcomes by readmission rates, but differ in the timeframe, with one using 45 days and another only 30 after hospital discharge.

Currently, most, if not all, of the 63 registries in RoPR have links in the National Institutes of Health's www.clinicaltrials.gov.  But trying to find registries there would be like looking for a needle in a haystack, Berliner explains. That's why it's important to separate out those registries in a separate system.

"Our system is kind of confusing," she laughs, "but only because we think it ultimately will be less confusing." Berliner believes strongly that the RoPR database must have a curator to help organize the listings. "The idea is to take registries in the U.S., like those run by Kaiser Permanente, and those from other countries like Sweden and Australia that have really good national registries, and pull the data together."

The RoPR project was enabled by a $5 million, three-year grant from the American Recovery and Reinvestment Act of 2009, which also included a lot of stakeholder engagement efforts and produced a registry handbook for physicians and others who want to create their own registries.

The next three years will be funded for an undetermined amount through the Patient Centered Outcomes Research Institute (PCORI), Berliner says.

Now, the trick is to get more people to register their patient registries, Berliner laughs. "We're trying to reach out," she says. "Hopefully, you will write an article, and that will make some people want to register."


Cheryl Clark is senior quality editor and California correspondent for HealthLeaders Media. She is a member of the Association of Health Care Journalists.
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1 comments on "Meet the Mother of All Patient Registries"


R. Kaan Ozbayrak, MD, MBA, CPE (7/12/2013 at 6:54 PM)
International Consortium for Health Outcomes Measurement (ICHOM) has a similar effort at http://ichom.org/registries/role-of-registries/