Autoimmune diseases are the third most common category of disease in the United States after cancer and heart disease, although they do not receive as much attention or awareness. Autoimmune diseases cause the immune system to attack normal tissues in the body – simply, the body attacks itself. These diseases affect approximately 8% of the population, 78% of whom are women. Autoimmune diseases can affect virtually every site in the body, including the endocrine system, connective tissue, gastrointestinal tract, heart, skin, and kidneys.
UNC’s Thurston Arthritis Research Center (TARC) is at the forefront of developing and testing new treatments to reduce the impact of autoimmune diseases. The Center’s Clinical Trials Program, led by Dr. Saira Sheikh, is one critical way the Center helps those living with autoimmune diseases develop a path forward.
Dr. Sheikh, who is trained and board certified in Internal Medicine, Rheumatology and Allergy/Immunology describes her work as “asking scientific questions that directly impact the care of patients with complex autoimmune diseases.” In addition to her role as director of the Clinical Trials Program, Dr. Sheikh leads the newly launched Autoimmunity and Lupus Research Program at TARC and directs the UNC Hospitals Rheumatology Lupus Specialty Clinic. Through these multi-faceted roles, she is working to understand lupus and other similar autoimmune diseases such as Sjogren’s syndrome. Nine out of 10 people living with lupus are women, most of whom develop the disease between the ages of 15 and 44. This autoimmune disease is particularly complex because, as Dr. Sheikh describes it, “no two patients have the same brand of lupus.” Because of this complexity, treatments for lupus and Sjogren’s syndrome have not advanced at the same pace as those for other autoimmune diseases such as Rheumatoid Arthritis, which has seen huge advances in the last two decades. The FDA has approved just one lupus therapy drug in the last 60 years, and there are no disease modifying therapies approved for the treatment of Sjogren’s syndrome, with current options limited to only mild symptom control.
The prospect of identifying new therapeutic approaches that could transform the lives of her patients drives Dr. Sheikh’s work in clinical trials. Often, the ideas and projects launched are investigator-initiated, and stem directly from concerns and questions patients bring to their physicians. For instance, many of her patients, the majority of whom are women, experience “brain fog”. This manifests as difficulties with concentration, focus, and memory, as well as cognitive concerns and symptoms of depression. Brain fog affects these women profoundly in their day-to-day activities. Patients with Sjogren’s and lupus who experience these symptoms have difficulty caring for themselves and their families, and are unable to fully participate in the activities they love.
“This is heartbreaking to me,” says Dr. Sheikh. Through their latest endeavor “The Lupus Brain Initiative”, Dr. Sheikh is collaborating with colleagues in Neuroscience at UNC and hopes to understand the causes of brain fog and focus on innovative strategies and therapeutic approaches that can create positive impact on the lives of patients. Dr. Sheikh describes the ultimate goal of the initiative as “making sure that all of our patients with autoimmune diseases are not only surviving, but truly thriving.”
An important piece of Dr. Sheikh’s work is scientific discovery through team science, working with laboratory scientists to design and answer research questions that explore the “bench to bedside approach”. A new project utilizing a “multi-omic” approach uses genomics to develop unique profiles and signatures for patients with autoimmune diseases to identify molecular markers that may be able to predict disease prognosis and treatment response.
Another critical component of Dr. Sheikh’s work involves increasing the diversity of participants in lupus clinical trials. Lupus is two to three times more prevalent among women of color than white women; however, patients enrolled in clinical trials do not match these demographics. Project PURPLE (Programs to address Unmet needs and Representation of all Participants in Lupus clinical trials using mobile technology for Engagement) focuses on addressing the barriers and unique concerns of clinical trial participation for all women, particularly women of color.
Project PURPLE uses mobile technology and customized physician avatars to deliver credible, culturally relevant information to patients about the clinical trials potentially available to them. Dr. Sheikh feels fairly confident that her avatar will not replace her or take her job! The project is in the pilot phase at UNC, and if successful, it will expand to develop a model for using mobile technology to bridge gaps between patients and clinical trials enrollment.
Dr. Sheikh’s work to improve the lives of patients would not be possible without donor support. Because autoimmune diseases primarily affect women, it is not surprising that the vast majority of major gifts supporting Dr. Sheikh’s research and innovations have been from women.
“I am grateful beyond words each day to know amazing and courageous men and women with autoimmune diseases, who not only live with the disease on a daily basis, but are such strong supporters and advocates for our work, and are committed to advancing science to improve the lives of others. As a female physician and researcher, support from incredible women not only provide the financial means to develop important programs, but also with amazing moral support,” says Dr. Sheikh. “I see our philanthropic donors as close partners in our journey to provide hope and healing for all our patients.”