The study will include two groups: One group is a center based group that participates in the study at one of our two centers: University of Pittsburgh and Attune Health/Cedars Sinai Medical Center. The other group involves you, people from all over the country participating in the study through our My Pacer App.
The first aim of the study is to reach a broader range of myositis patients across the country through tele-medicine research. Without the geographic constraints of traditional studies, we hope to accelerate recruitment, collect data remotely and follow up with patients using the telemedicine approach. The data from the traditional centers and telemedicine group will be compared to ensure that data collection and integrity is uncompromised.
Given that many myositis patients have disease that responds poorly to treatment, there is a need for discovering new treatment options in myositis clinical trials. However, the current outcome measures (tools to assess if improvement occurs) for clinical trials in myositis have many flaws. There is a need for better tools to assess treatment response from the patient’s perspective (patient reported outcome) as well as to assess improvement in a patient’s physical function.
This study will evaluate physical activity monitors (PAMs), e.g., Fitbit Activity log, as an objective outcome measure for physical function in myositis in conjunction with a physical function questionnaire completed by the patient (as patient reported outcome) to measure the patient’s perspective on changes in their physical function.