Researchers and Patients Reap Benefits of Data Warehousing

When SAS awarded a five-year, $600,000 software grant to the University of North Carolina Center for AIDS Research, the goal was to help researchers organize their clinical and research data by setting up an electronic AIDS research database and data warehouse. But the project, which recently became operational, proved an unexpected boon for the university's AIDS patients: their care has improved as a result of the more accessible and accurate clinical and demographic information.

"Our collaboration with SAS initially arose from a strong need to get clinical and research data about our HIV patients into an organized form," says Dr. Joseph J. Eron, clinical core director at the Center for AIDS Research (CFAR) and associate professor of medicine at the university. "With help and expertise from SAS, we developed an incredibly powerful tool for doing both clinical and translational research, moving clinicians and basic scientists closer together. And while it wasn't our primary intention, the database already is improving the care of people in our clinic because clinical providers now have their information in a much more organized format."

Through the online database, doctors at the UNC HIV clinic receive reminders on basic health maintenance issues that prompt them to update their patients' immunizations, such as vaccinations for hepatitis A and B, pneumonia, influenza and any tests that need to be ordered. Another valuable feature of the database is a graphic printout of patients' immune cell count and viral load. These graphs help demonstrate the impact medication is having on a patient's health.

The clinical and demographic information collected includes CD4 cell counts, HIV RNA blood levels and other laboratory and clinical data related to past and present immune system functioning, medication history and immunization history. Also included is the patient's health condition at time of initial care at UNC, demographic and social support information.

Entered into the database, the now-organized information allows for more effective and efficient data analysis, including group comparisons for research. Having this database also improves collaboration potential with other HIV researchers, both within the university and elsewhere. This is important for HIV research where large, diverse study samples are needed to help better understand the epidemic, including prevention and treatment.

Eron says he hopes one of the ways the database will grow is through UNC's involvement with multiple clinics elsewhere in the state. He also notes that plans are afoot for a "super database" involving all 18 centers for AIDS research in the United States. "Currently, we're among the few that have an organized database," he says.

"This has been a remarkable collaborative effort between the UNC CFAR Clinical Core, UNC Hospitals, SAS, and most of all, our patients, who have graciously (and enthusiastically) agreed to participate. University medical centers and hospitals carry a special responsibility to pursue new knowledge through clinical research," says Dr. Ron Swanstrom, director of UNC CFAR and professor of biochemistry and biophysics at UNC School of Medicine. "We are especially grateful to have had the opportunity to bring the intellectual force of SAS to bear on this problem in HIV/AIDS research, and we hope this is a relationship we can build on into the future."

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