Description
Lupus is an autoimmune condition, in which the body’s immune system attacks its own tissues and causes inflammation throughout the body. It is most common in young women, and in the United States, it is especially prevalent in under-represented populations, such as African American, Latino, Asian, and Native Peoples.
Why It’s Important
It is our goal to collect survey data from people with Lupus so that their voices can be heard and improvements can be made to their care. While there are several clinical lupus cohorts around the country, FORWARD’s Lupus Study is unique because it includes people across the US. We are trying to gather information that can express how lupus and its treatment affect the day-to-day lives of people with the condition. We are also able to look at lupus across the lifespan.
Who Should Join?
People with any form of Lupus are encouraged to join! Volunteering in this research means answering detailed surveys every six months.
Putting Data to Work
Patti Katz, PhD, is currently planning a study to look at reports of cognitive symptoms—things like problems with memory or ‘brain fog’—to better understand how common these are among people with lupus, whether there are age differences in how these symptoms are experienced, and the extent to which cognitive symptoms affect daily activities.
Get Started
If you would like to add your story to those we have already collected, click the button below to get started:
Meet the Study Director
Dr. Patricia Katz, “Patti,” is an internationally recognized leader in the areas of patient-centered health outcome measurement, development of patient-reported outcomes, and the association between behavioral factors such as exercise, stress, and trauma, and disease outcomes. In recognition of her many achievements, the American College of Rheumatology awarded her the Lifetime Achievement Award and the Excellence in Investigative Mentoring Award. She was designated a Master of the American College of Rheumatology/Association of Rheumatology Professionals.