Dr. Shadick: Maintaining a large patient database takes a “village.” In this case, that means a well organized team of researchers, devoted doctors who contribute information about their patients, and devoted RA patients who tirelessly remain in the study and fill out forms. However, many of the participants and the rheumatologists find participating in the BRASS registry rewarding, particularly when new scientific discovery occurs from the data. There are a few limitations in using registry data. For example, registry data (unlike randomized controlled trials) often lack the ability to evaluate drug efficacy. On the other hand, observational registries are more representative of the real-world population, and as such we are observing instead “real world effectiveness.”
This column, “Ask the Expert,” regularly appears in Rheumatology News, an Elsevier publication. Dr. Nancy A. Shadick is a clinical researcher and rheumatologist at Brigham and Women’s Hospital and an assistant professor of medicine at Harvard Medical School in Boston. She has received research grant support from Biogen Idec, Crescendo Biosciences, and Amgen.