ARAMIS was the first large-scale database system for chronic diseases. In subsequent years, other physicians contributed their data to the project. Dr. Fries and his colleagues at Stanford University administered the database and turned it into a resource available to clinicians and researchers nationwide.
Dr. Wolfe continued to amass data from his private practice and share it with ARAMIS, but this was a money-losing proposition for him, despite funding from ARAMIS and income generated from his practice. Dr. Wolfe also received funding from special research projects that he oversaw for pharmaceutical companies interested in gathering safety information and other data about their products.
Over time, Dr. Wolfe grew dissatisfied with certain aspects of ARAMIS. He believed that too few centers were involved, and that some of the data were out of date or incomplete. He also questioned the relevance in the practice setting of some of the information being collected and stored. “I wanted to collect more quality-of-life and economic measures than ARAMIS had,” he recalls. Finally, in 1998, aided by funds from one of his private research projects, he ended his official association with ARAMIS and started the NDB.
The NDB has several goals: to measure the effectiveness and adverse effects of current and future therapies; to identify factors that influence and predict outcomes—including clinical, genetic, demographic, and psychosocial predictors—and to develop new assessment tools and statistical and epidemiological methods.
Topics of Research Generated by NDB
Data Collection and Analysis
- Disease activity assessment
- Questionnaire development
- Clinically important differences
- Direct medical costs
- Indirect medical costs
- Cost effectiveness
- Income and wage losses
- Work disability
- Access to care and adequacy of care
- Quality of life
Efficacy and Effectiveness
- Effectiveness of DMARD and biologic therapy in the clinic
Complications and Drug Toxicity
- Lymphoma and other malignancies
- Joint infection
- Cardiovascular disease
- Liver disease and drug toxicity
- GI ulceration, bleeding, and perforation
- Sinus disease
Interstitial lung disease
Source: Wolfe F, Michaud K. A Brief Introduction to the National Data Bank for Rheumatic Diseases. Clin Exp Rheumato. 2005;23(Suppl 39):S168-S171).
The NDB Today
To obtain information for the NDB, Dr. Wolfe wrote to 900 rheumatologists, asking them to invite their patients to participate. Patients who agreed filled out detailed questionnaires. With updates every six months, people who have been enrolled since the beginning of the project have gone through 18 questionnaires. To date, more than 30,000 patients have completed more than 156,000 semi-annual questionnaires and Dr. Wolfe estimates that the NDB has more than 14,000 patients whose accounts are still active.