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Tumor Registry a Data Powerhouse

Network - Spring 2011

By Mary Brolley

Sure, it’s a club you never meant to join. 

But if you’ve ever been an MD Anderson patient, chances are you’re a member.

“It” is MD Anderson’s Tumor Registry, a massive database of information on more than 800,000 patients registered at the institution since March 1, 1944.

About four months after a patient’s first appointment, his or her medical information is entered — abstracted— into the registry. Most of the information gathered is basic: demographic, type of cancer, stage, key dates and treatments received.

Why does the registry staff wait four months?

“By that time we have a definitive diagnosis, and treatment is under way,” says Sarah Taylor, informatics manager for the Department of Tumor Registry.

More than a snapshot

Taylor draws a distinction between MD Anderson’s and most other tumor registries. The institution’s registry contains data on every patient who’s received a medical record number since March 1944, including those who have a non-cancer diagnosis (e.g., aplastic anemia).

“This makes it a true hospital registry,” she says. “Most other hospitals’ tumor registries only collect information on cancer patients. We collect complete data on each patient’s cancer history, including prior treatments and prior primary cancers.”

Dozens of MD Anderson departments receive data from the registry. The data is used most often to identify study populations, compare treatment outcomes and conduct survival analyses.

“Our financial departments also use the database when determining resource needs. In fact, it was used to determine the size of the Mays Clinic,” Taylor says.

A crucial department responsibility is annual contact with patients. To this end, last contact date in the registry is automatically updated when a patient visits the institution. They also send letters to patients who don’t come in, followed by a phone call if there’s no response.  

‘Thanks for giving me another 15 years of life’

In the letters, patients are asked just two questions: 

  • Have you been free of cancer for the last 12 months? 
  • Have you been treated for cancer in the last 12 months?
“That’s it,” Taylor says. “But we also ask them to write anything they’d like on the back. Often we get questions or requests. And, of course, we follow through.

“Sometimes patients ask us to pass on a thank-you message to their doctors or clinics. ‘Thank Dr. Smith and her staff for giving me another 15 years of life.’”

Taylor, who’s been at MD Anderson for 22 years, says that when the institution committed to computerizing the registry in the 1970s, employees painstakingly entered 30 years’ worth of existing data so the database would be complete.

When the American College of Surgeons visits MD Anderson every three years to review its accreditation, the registry is included. And, as required by state law, data is regularly submitted to the Texas Cancer Registry.

“I continue to be impressed with the registry, and that MD Anderson gives us the resources, the staff and a dedicated information technology specialist to keep it running,” she says.

© 2015 The University of Texas MD Anderson Cancer Center