Lupus is a chronic autoimmune disorder that causes inflammation and pain throughout the body. Most common in women (9 of 10 diagnosed cases); it attacks both joints and organs – including the skin. Lupus is not curable, but symptoms can be managed with medications.
Researchers hope to learn more about lupus and identify ways to predict or prevent emergence, lessen symptoms, and one day perhaps find a cure. At Mayo Clinic, multidisciplinary teams have been formally investigating lupus for over 30 years, and have published more than 350 peer-reviewed research articles.
Now one of these teams is taking that research to the next level — by going back to the beginning. Recently the Centers for Disease Control and Prevention awarded a renewable grant to Mayo Clinic, with which Mayo's program joins an elite network of national lupus registries seeking better understanding of lupus in specific populations.
Mayo Clinic's program is led by Ali Duarte Garcia, M.D., a rheumatologist, and Cynthia Crowson, Ph.D., a biomedical and statistical scientist specializing in rheumatology. Together with a multidisciplinary group of researchers, they seek to expand existing knowledge of cutaneous lupus erythematosus (CLE) and systemic lupus erythematosus (SLE), the two most common types of lupus. They are doing this by identifying patients in earlier stages of the disease, and developing a picture of disease progression.
"Our objectives are to characterize the long-term natural history of adults with SLE and CLE and determine health care access and gaps those adults with lupus experience," says Dr. Duarte Garcia. "We further plan to document how opioid pain therapy is used in adults with SLE and assess disparities and other factors associated with lupus outcomes."
"Most of the existing research has focused on the most severe end of the lupus disease spectrum," adds Dr. Crowson. "In addition to downplaying the true health care burden of lupus, our limited understanding of less severe manifestations of the disease may be contributing to poorer long-term outcomes."
Lupus research at Mayo Clinic links with the Women's Health Research Program.
"It is a key component of women's health, since lupus affects women much more frequently than men," says Dr. Duarte Garcia. "Lupus also often involves either skin or kidneys, and in our new project we have experts from both dermatology and nephrology."
The new program also includes partnerships with other researchers who focus on opioids and health disparities.
The researchers will rely heavily on the Rochester Epidemiology Project (REP) to pursue their aims. This unique medical records linkage system and research collaborative centered in Rochester, Olmsted County, Minn., spans communities in 27 nearby counties in Minnesota and Wisconsin. Through the Rochester Epidemiology Project, the researchers are able to identify and follow population-based cohorts of people with cutaneous lupus erythematosus or systemic lupus erythematosus, matched by sex, age, race/ethnicity and county of residence to the general population.
"As we get further into this research, we will gain insight about how lupus begins or is first diagnosed, says Dr. Duarte Garcia. "We will be able to characterize the long-term progression of and community care for this debilitating disease."
"Our questions about opioids are especially relevant in today's world," says Dr. Crowson. "The opioid epidemic has alerted us to the need to investigate the typical prescribing practices for opioids in different conditions.
"And in general, we want to determine if patients are receiving the best possible care options regardless of external factors such as rural versus urban living, socioeconomic status and so forth," she continues.
While the investigators do not expect to find a cure while conducting this new research, they do anticipate advancements in knowledge that will lead to better outcomes for people with lupus in the communities of the Rochester Epidemiology Project, throughout the nation and around the world.
This expectation stems from the basic driver of Mayo Clinic Research – to advance knowledge to transform the practice of medicine. This mission is led by the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, where much of this research will occur. The center works from within Mayo Clinic's medical practice to identify ways to improve outcomes, manage costs, and enhance the experience of health care among patients, providers, family and caregivers.
Tags: About, Ali Duarte-Garcia, area deprivation index, Center for the Science of Health Care Delivery, Cynthia Crowson, dermatology, health disparities, health sciences research, lupus, nephrology, News, opioids, practice improvement, Progress Updates, rheumatology, Rochester Epidemiology Project