UAB Synopsis, Vol. 26, No. 10, March 19, 2007

UAB’s Center for AIDS Research (CFAR) will house the CFAR Network of Integrated Clinical Systems (C-NICS), a National Institutes of Health-funded information sharing network to support outcomes research by electronically merging clinical data from seven CFARs across the country.

The National Institute of Allergy and Infectious Diseases and the National Heart, Lung, and Blood Institute awarded UAB $2.45 million over 5 years to build and manage the network.

“This network is the first formal effort to track HIV/AIDS treatment outcomes on a broad comprehensive scale,” says C-NICS principal investigator Michael S. Saag, MD, an internationally known AIDS expert and director of UAB’s CFAR.

C-NICS will garner more than 15,000 patients’ clinical data collected via electronic medical records at each site and combine these data with lifestyle and quality of life information from secure computerized questionnaires in waiting room kiosks. At each visit patients will assess symptoms, body image, mental health status, substance use, adherence to medication regimens, and other factors.

All data are collected using appropriate informed consent and privacy protections. To adhere to HIPAA standards, individual patient identification information is omitted. Clinical specimens also will be collected and stored for translational research projects. A finite resource, the specimens will be conservatively used and will be stored at their institution’s CFAR.

The C-NICS sites previously captured electronic data in their clinical practices. The C-NICS grant facilitates a collaborative, interactive information sharing network using a unified taxonomy nation-
wide, allowing the centers to pair pre-existing data with new data and to share that data not only among CFARs but also with any interested investigator worldwide.

Dr. Saag and colleagues are developing rules and procedures to guide sharing and a Web site to access C-NICS data. The University of Washington will house the data.

These electronic medical records will allow physicians to alter treatment protocols as patterns of adverse effects, long-term complications, and treatment responses surface. Clinicians will be able to prescribe treatment regimens based on successful outcomes for each patient’s symptoms. Ultimately, Dr. Saag plans to incorporate decision-assist software to recognize patterns of success and suggest the best treatment regimen for a specific patient.

“This type network represents the future of HIV/AIDS clinical investigation,” he says. “By heading this national effort, UAB is poised to emerge as leader in the rapidly advancing discipline of medical informatics.”