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).
As a thirty-five year lay (former primarily diagnostic industrial electrician) victim, investigator and discoverer of added monosodium glutamate (MSG) related chronic disease doing personal research on lactic acidosis tonight I just happened upon Dr. Frederick Wolfe and his connection with fibromyalgia and thought perhaps he’d be interested in a few basics I’ve fairly recently found on my own. First, the root cause is much more common than thought very, very mild (subclinical) food (minimally) allergy reactions that don’t indicate for with modern allergy testing and/or regular check-ups with fasting blood tests. Next, the practically harmless individual reactions can become chronic, disabling and/or deadly with MSG triggered extra histamine (probably; minimally) contributing to extended and overlapping reactions and chronic mild inflammation. Over time a mild acidic condition can somehow result, denying and/or robbing the bones, nerves and/or teeth (minimally; to neutralize the acid) of essential minerals to eventually, with so many individual variables, result in any number of disease conditions. One possibility is uric acid (minimally) crystallizing in smooth muscle tissue (as well as joints, gout) to result in strange and/or painful sensations all over the body; fibromyalgia. Before I increased my intake of essential bone minerals in 2010 I couldn’t make a tight fist with either hand. Despite some backsliding since with changes in brands and formulas (minimally), in 2015, at nearly age seventy-two, I can still make fists with both hands but not as tight and I’m also still ‘at moderate risk’ of osteoporosis. More upon request.