The Myositis Association (TMA) is partnering with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient Centered Tele-Research ( My-PACER ).” The investigators of this study (Drs. Rohit Aggarwal, Chester V. Oddis and Siamak Moghadam) have a long-standing interest in myositis. Dr. Aggarwal is also vice chair of TMA’s Medical Advisory Board.
Patients with polymyositis (PM), dermatomyositis (DM), or necrotizing myopathy (NM) may be able to participate in this observational research study to help find innovative ways to conduct research in rare diseases like myositis, which may help in finding effective therapies in future.
What it involves: During this six-month study, you will be first asked to answer simple questions about your disease on a mobile app or website, followed by consent and permission to review your medical records. If you are eligible, you will be asked to fill out monthly questionnaires about yourself and your disease, complete simple physical tests at home, wear a Fitbit on your wrist for one week each month, and have two audio-video chat sessions with one of the study doctors.
No in-person study visit is required. Study participation can be done from your home or anywhere else, using our study app on your smart phone or through our study website. A small appreciation token of $ 75 is provided upon completion of the study.
Purpose of the study: Clinical studies in myositis are limited due to difficulty in recruiting patients. This is because most patients live too far from a specialized myositis center to participate in clinical studies and trials. By using technology, such as a smartphone app and tele-medicine, we hope to overcome geographic barriers and ultimately allow patients to participate in clinical studies from the ease of their home.
Researchers hope their findings will help all myositis patients in the future. We look forward to working with you in the future and welcoming you to the My-PACER family.