Myositis Support and Understanding Association is partnering with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient Centered Tele-Research (My-PACER).”

MSU partners with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient Centered Tele-Research (My-PACER)”

The Myositis Support and Understanding Association 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.

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.

How to Join

Patients can download the MyPacer app by searching “MyPacer” on the iPhone App Store or Google Playstore. Patients can also visit our website at MyPacerStudy.com. Please see the attached flyer.

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.

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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