News & Commentary

Registries Called Underdeveloped


Most clinical registries do not measure up to the challenges of modern medicine, lacking both data geared to specialty care and a way for the public to access those data easily, according to researchers at Johns Hopkins.

The researches looked at 153 registries to see if they could be the foundation of long-anticipated national clinical registries.

Not yet, says a study published in the April 24, 2015, issue of the Journal for Healthcare Quality. The takeaway from the Johns Hopkins researchers is that much more needs to be known about registries and their effectiveness.

They looked at 73 health services registries, 66 disease registries, and 14 combined registries.

“With a few notable exceptions, most registries are underdeveloped, underfunded, and often not based on sound scientific methodology,” senior investigator Marty Makary, MD, said at the time. Researchers conducted their search between July 1, 2012 and Nov. 1, 2012.

The researchers found that 98 of the 117 recognized medical specialties do not have a national clinical registry affiliation, so they are missing out on an opportunity for scientific advancement and quality improvement in health care.

Registries work better when the data are adjusted for and audited. “We found that less than a quarter of registries in our study risk-adjusted or audited their data, suggesting the need for better handling of data in reporting outcomes,” the researchers said.

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