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Michael Barnes

It might not be the sexiest subject, but improved medical data could save lives

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Here’s part of our story on the Austin medical data nonprofit.

Next time you pass one of those blank office towers downtown, consider what miracles might be transpiring inside.

Take, for instance, the ponderous Texas Medical Association building at 401 W. 15th St. On the ninth floor, a smallish group — once a “virtual” nonprofit — has quietly changed one crucial component of medical research.

The official name of the Clinical Data Interchange Standards Consortiumdoesn’t really sum up its scope. Nor does its common abbreviation, CDISC.

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Rebecca Kush

There, Rebecca Kush and her team — linked up with researchers around the world — make sure that medical studies “talk to each other” by standardizing data.

“That way, we can aggregate all the data in big databases for more statistical power,” Kush says. “We wanted pristine data that would be able to help us find a cure for a disease. Before, the way people were being asked questions, for instance, to assess Alzheimer’s, were in a different order, asked in a different way, adding a question here, leaving out another. You end up with a mess.”

Researchers anywhere can now use these databases to better see the progression of a disease and better test treatments. CDISC and its partners have already made progress on condensing thousands of variations in studies about Alzheimer’s disease, Parkinson’s disease, kidney disease and traumatic brain injuries.

The Federal Drug Administration now insists that researchers use CDISC protocols.

“We have 35 full-time staffers around the globe,” Kush says. “We contract with 50 or 60 educators, and we have thousands of volunteers.” …