To remedy the situation they developed new ways of organizing the data and designed the Health Assessment Questionnaire (HAQ), which posed questions in a patient-friendly manner. They also realized the importance of mail and telephone follow-up and made those tasks standard parts of the data collection process.
Join the data bank!
The NDB is actively recruiting patients with all rheumatic diseases to participate in its data-gathering efforts. In fact, there is a special effort underway to enroll patients with systemic lupus erythematosus who are being treated in the community rather than in tertiary centers. Patients and rheumatologists can get more information and enroll online at www.arthritis-research.org.
Along with illustrating trends over time, databases present new questions for investigators to tackle. For example, Dr. Wolfe would like to use the data in the NDB to link to other registries, such as cancer and infectious disease registries. Such links are available in other countries, but not yet in the United States.
Information in databases must be better organized to enhance the accurate measurement of treatment efficacy, costs, and toxicity, so investigators can compare the value of different forms of therapy. “This is being done already,” says Dr. Fries, “but some improvement is necessary.”
The genetics and pathophysiology of rheumatic diseases are ripe for further research. Indeed, the NDB already gathers genetic and imaging data for outcomes research, and the developers of the CORRONA database are collecting proteomic and biomarker measures and have begun examining the relationship between single nucleotide polymorphisms and clinical outcomes.
“Large data banks are good for these types of studies, but for that they need more funding,” says Eric Matteson, MD, consultant in rheumatology and professor of medicine at the Mayo Clinic in Rochester, Minn.
The future of the NDB is another important issue. Several of the physicians interviewed for this article wonder what will happen to the NDB when Dr. Wolfe retires. This is a question that Dr. Wolfe himself has been pondering. “The NDB will continue, regardless of who directs it,” he assures TR. In fact, the NDB has just embarked on a 10-year safety-and-outcomes study.
Dr. Wolfe is committed to keeping the NDB independent of both the government and industry, and envisions it being run by younger rheumatologists and epidemiologists. Dr. Wolfe is still considering options for the NDB, perhaps turning it over in its entirety to a national organization or a university. The gift will have only one string attached, he says: “The recipient must maintain it. They must keep it alive.”