Because of their focus on patient quality of life, rheumatologists have been at the forefront of research on chronic and disabling disease. With few exceptions, rheumatologic diseases are life-long, with outcomes reflecting the disease itself, the side effects of therapy, and the interplay with other comorbidities as patients age.
Not surprisingly, the study of such diseases as RA and osteoarthritis is enormously complex, expensive, and time consuming. Governmental agencies have been reluctant to sponsor studies on long-term outcomes because they prefer shorter, more focused, hypothesis-driven inquiries. Similarly, industry-sponsored studies tend to target the effects of a specific treatment in a narrow window of time rather than the whole life of a patient.
Enter Frederick Wolfe, MD, a rheumatologist in Wichita, Kan. Dr. Wolfe has maintained a patient database since the early days of desktop computers back in 1974. In 1998, he established the National Data Bank for Rheumatic Diseases (NDB). Today, this database holds information on more than 14,000 U.S. patients who have various forms of rheumatic disease. NDB is arguably the largest, most comprehensive, and most up-to-date database of its kind in the United States. “I wanted to develop something that would be an epidemiologically valid and useful resource for patients and their rheumatologists,” says Dr. Wolfe.
The NDB and other databases like it have afforded rheumatologists an in-depth view of treatment outcomes, side effects, and the overall burden that arthritis imposes on patients’ lives. They also demonstrate the invaluable contribution that large, long-term databases in general can make to knowledge of chronic illness, its natural history, and its toll on everyday life.
Birth of a Data Bank
The history of rheumatology databases began in the 1960s, when the late Donald Mitchell, MD, professor of medicine at the University of Saskatchewan, and Joseph Levinson, MD, professor emeritus of medicine and pediatrics at the University of Cincinnati, began collecting and storing patient data. Dr. Wolfe, however, was one of the first rheumatologists to computerize his records.
Shortly after he began his private database in 1974, Dr. Wolfe met James F. Fries, MD, who had started developing a large national database of patients with the rheumatic diseases. Drs. Fries, Wolfe, Mitchell, Levinson, and Thomas A. Medsger, MD, professor of medicine at the University of Pittsburgh, who was assembling a database on patients with scleroderma, combined their data to create a fledgling system that evolved into the Arthritis, Rheumatism, and Aging Medical Information System (ARAMIS).