TMA is excited to announce that The Journal of Rheumatology recently published a pivotal study titled “The Dermatomyositis Disease Symptom Questionnaire (DM-DSQ): A Measure to Assess the Patient Experience of Dermatomyositis Symptoms.” This groundbreaking research, led by an international team of myositis experts, including TMA medical advisors Dr. Lisa Christopher-Stine, Dr. Namita Goyal, and Dr. Tahseen Mozaffar, marks a significant advancement in understanding and assessing the symptoms of dermatomyositis (DM).
This study was an important step in the development of the DM-DSQ as a tool in clinical trials and other research to evaluate DM symptoms from the patient’s perspective. It involved qualitative interviews with 30 individuals with DM, aiming to validate the DM-DSQ and ensure it accurately captures the experience of those who live with DM.
Importantly, Kaniah Gunter, a dedicated TMA member, advocate, and leader, was also part of the research team that conducted the study. As a co-leader of TMA’s Women of Color Affinity Group, Kaniah has been instrumental in raising awareness about myositis among communities of color, a group that is disproportionately affected by myositis. Diagnosed with dermatomyositis herself, Kaniah’s insights and experiences have enriched the study, ensuring the DM-DSQ reflects the diverse experiences of all patients.
The DM-DSQ is currently being used in a Phase 2 clinical trial and shows promising preliminary results. It has the potential to become a valuable tool for evaluating patient-reported outcomes in DM, paving the way for improved treatment strategies and better quality of life for those affected by this debilitating disease.
This collaborative effort underscores the importance of patient-centered research and the dedication of TMA’s medical advisors and members to advancing the understanding and treatment of myositis. The Myositis Association continues to support and advocate for innovative research that brings hope and improved care to the myositis community.