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Austin’s CDISC changes the world, one set of medical data at a time

Rebecca Kush leads a group that aggregates info collected in medical research.

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 Consortium doesn’t really sum up its scope. Nor does its common abbreviation, CDISC.

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.”

A special calling

Alert and meticulous, Kush, 63, was born in Ames, Iowa, and grew up in Los Alamos, N.M. She studied biology and chemistry at the University of New Mexico and pursued physiology and pharmacology during graduate work at UC-San Diego’s School of Medicine in La Jolla, Ca. Her doctoral research settled on cholesterol metabolism. At Las Alamos, she also did nuclear medical research.

“The first thing I really wanted to do was clinical research,” Kush says. “But I didn’t want to be stuck in a lab all my life. I wanted to be with people. I didn’t think I was cut out to be a doctor.”

She worked more directly with people at the National Institutes of Health Center in the Phoenix Indian Medical Center.

“Pima Indians have the highest rate of diabetes in the world,” she says. “Low cholesterol, but high incidence of diabetes. We were studying effects of overfeeding and underfeeding. They get very high insulin levels at an early age. The theory is that they come from a history of feast and famine. Without famine, obesity. But they have a way of getting rid of cholesterol.”

Kush moved to Austin in 1982 when her husband — then her fiancee — worked for Schlumberger in optical sciences.

“I was hoping for a medical school, but there wasn’t one,” she says. “So now — yay! — there’s a medical school more than 30 years later.”

Instead she worked for St. Edward’s University on a project to increase access to the medical profession and did a second post-doc in immunology at the University of Texas. When her husband landed jobs in Japan and France, she continued her research, and after they returned to Austin in 1988, she worked for Pharmaco for nine and a half years.

At that Austin drug-testing company, hundreds of study sponsors insisted that Pharmaco build their databases to their own standards, not a common one.

Then a chemical company representative asked: “Where are your data-exchange standards?”

“We didn’t have any,” Kush says. “So we started a volunteer group in 1997. Totally volunteer.”

Kush ran the early version of CDISC by aggregating data out of her home office in West Lake Hills. Now there are CDISC coordinating committees in China, Japan, Europe and the Asia-Pacific region.

An early success story involved a standard scoring system for Alzheimer’s therapies. Before CDISC stepped in, each study included, say, 100-200 people.

“Now they have 6,000 patients worth of data,” Kush says. “They are using the same data standards in Japan.”

She is excited about possible collaborations with the UT Dell Medical School. Recently, Dean Clay Johnston, whose background includes the study of traumatic brain injuries, spoke at CDISC’s first public reception and fundraiser, in the Texas Medical Association’s lobby and assembly area, which is where this reporter first found out about their mission.

The nonprofit CDISC operates on a $7 million budget.

“Its always going up,” Kush says. “But we could do more with more money. It’s funny and it’s sad.”

House as museum

Fourteen years ago, philanthropists Joe and Teresa Long, namesakes of the Long Center for the Performing Arts and the Teresa Lozano Long Institute of Latin American Studies, among other Austin gems, fixed up their Old Enfield house.

It was no quick job. They added rooms, including one underground. They seamlessly combined traditional decorative styles. Most importantly, the created a perfect space for their incredible art collection.

Finally, at a fundraiser for State Sen. Judith Zaffirini, I saw it.

Zowie! Impressionists, Post-Impressionists, abstracts, all extraordinarily striking. I spent some time with each one — and would like to spend more. They also display dozens of intricate pieces in jade, ivory and coral.

A few dozen neatly dressed guests — who raised $100,000 that day — paraded into one room to hear from Joe Long and Sen. Zaffirini. Turns out, she is the most productive Texas state senator; she sponsored more than 100 bills last session. No issue too small to tackle. She already has signatures waiting for bills the next session.

For somebody whose district runs from Del Valle to the Lower Rio Grande Valley, she has remained incredibly active for as long as I can remember.

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