The heterogeneity of many of these conditions, which display variable clinical and molecular phenotypes, also poses both a challenge and an opportunity, as researchers learn how to better understand the underlying disease pathophysiology. Current disease classification systems may have contributed to multiple negative trials in diseases like systemic lupus erythematosus. By necessity, researchers across rheumatology have begun to define different disease endotypes to improve trials results and advance treatment options for patients.
Value of Communication and Advocacy
Despite these challenges, researchers continue their work, driven both by a fundamental intellectual curiosity and by their desire to decrease disease burden and improve patients’ lives.
Communicating the value of this rheumatology research is key, and not just to the individuals who make specific funding decisions. “It’s important that we as a field stay united and advocate for everything that we do,” says Dr. Bracken. “I think it is going to be more and more important for scientists and physicians alike to be able to communicate better with the lay public about why what we do is important.”
Dr. Behrens shares his experience working with the devastating condition macrophage activation syndrome, which was poorly understood and lacked specific treatments early in his career. Through fundamental research to understand the underlying science, the condition now has targeted treatments and a much improved prognosis. “It’s not a fairy tale to say that we can make huge strides and have real successes,” he says. “Now is not the time to back off of that.”
Ruth Jessen Hickman, MD, a graduate of the Indiana University School of Medicine, is a medical and science writer in Bloomington, Ind.
References
- Nguyen AT, Aris IM, Snyder BD, et al. Musculoskeletal health: An ecological study assessing disease burden and research funding. Lancet Reg Health Am. 2024; Jan 8;29:100661.
- Ogdie A, Shah AA, Makris UE, et al. Barriers to and facilitators of a career as a physician-scientist among rheumatologists in the US. Arthritis Care Res (Hoboken). 2015 Sep;67(9):1191–1201.