Didem Saygin, MD's research encompasses a clinic and research infrastructure dedicated to understanding the causes and improving the treatment of the inflammatory myopathies. These diseases, together termed myositis, are potentially devastating yet poorly understood autoimmune diseases that target the muscles of the body, and for which our treatments are inadequate. The clinic includes rheumatologists, neurologists, pulmonologists, dermatologists, and research personnel who work together to provide the best clinical care for patients with myositis while advancing the understanding of these diseases through clinical and translational studies.

In general terms, Saygin’s research focuses on improving the quality of life and longevity of individuals with myositis. Saygin has validated numerous myositis outcome measures including objective tools and patient-reported outcome measures in order to optimize the assessment of muscle strength and other disease-related symptoms such as fatigue, pain, and physical function in both clinical practice and therapeutic trials. She has particular interests in utilizing objective devices for myositis disease activity assessment, disease classification, understanding pain experienced by patients with myositis, and data harmonization across myositis registries.
Active studies
Rush's Myositis Registry includes over 200 patients with confirmed diagnosis of myositis and has several active prospective studies funded through foundations, philanthropy, and federal grants. These active studies include but are not limited to the following:
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The myositis field has a paucity of objective outcome measures hampering the accurate assessment of patients and optimal design of clinical trials. Our work demonstrated the reliability, validity, and responsiveness of hand-held dynamometry and physical activity monitors (Actigraph® and Fitbit®) for evaluation of muscle strength and physical activity, respectively, in patients with myositis as promising objective outcome measures. This body of work significantly increased the number of available outcome measures in myositis with the requisite psychometric properties for use in clinical practice and therapeutic trials. Our currently active projects aim to understand if muscle ultrasound and MRI can be used to accurately assess and monitor disease activity in patients with myositis.
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Identifying robust and precise patient-reported outcome measures is crucial in understanding the effect of the disease on patients. An NIH-funded initiative, the Patient Reported Outcomes Measurement Information System (PROMIS), established tools that were encouraging for this purpose but had not been previously studied in myositis. Our work demonstrated the strong reliability and validity of the PROMIS physical function forms 8b and 20, PROMIS pain interference 6a and fatigue 7a forms in patients with myositis. Our work was the first to show a significant discordance between patient and physician reported global disease activity in one third of patients with myositis. The primary drivers of the discordance were pain, fatigue, and quality of life. This work advanced the understanding of the gap between patient and physician perspectives to help provide a more patient- centered care in myositis. Our currently active projects aim to identify robust patient reported outcome measures to study quality of life and physical function of patients with myositis.
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Pain has long been overlooked as a disease symptom in patients with myositis; therefore, little is known about myositis-related pain. Our currently active projects aim to investigate potential mechanisms of pain in patients with myositis by understanding the link between the myositis-related pain and neural dysfunction and disease related inflammation in the muscles and fascia.
Research opportunities for students and trainees
Over the years, Saygin has mentored many students, residents, and fellows who have become successful researchers and clinicians. She conducted studies on understanding the concerns and needs of rheumatology fellows during the pandemic and experiences of program directors and fellows with virtual fellowship recruitment. Her work also includes highlighting the unique challenges that international medical graduates experience through different platforms. She served as the chair of the American College of Rheumatology (ACR) Fellows-in-Training subcommittee and is currently co-chair of the ACR Knowledge Bowl. At the Rush Myositis Clinic, there could be several opportunities for clinical research and volunteer work that can be tailored based on the trainee’s prior experience and goals.

Rheumatologist
Principal Investigator and Director, Rush Myositis Clinic

Rheumatologist
Co-investigator

Pulmonologist for multidisciplinary clinical care and research for myositis-related lung disease

Dermatologist for multidisciplinary clinical care and research for myositis-related skin disease

Neurologist for collaborative myositis research with the Division of Neuromuscular Medicine, Department of Neurological Sciences

Neurologist for collaborative myositis research with the Division of Neuromuscular Medicine, Department of Neurological Sciences

Associate Clinical Research Coordinator
Division of Rheumatology, Department of Internal Medicine

Senior Clinical Research Coordinator
Division of Rheumatology, Department of Internal Medicine
Rush University Medical Center
1611 W Harrison Street, Suite 510
Chicago, IL 60612
Didem Saygin, MD
Assistant Professor
Department of Internal Medicine, Division of Rheumatology