Participate in COVID-19 Survey

The FSHD Society is partnering with researchers on an important study of the impact of COVID-19 on the muscular dystrophy community. Please read this letter from Dr. Rabi Tawil and click on the link below to take the survey. Deadline is May 22, 2020. Thank you!

Dear Participant,

We are reaching out to people in the FSHD Society because we are conducting a survey to understand the effect of the COVID-19 pandemic and the social policies in place to control the pandemic on people with muscular dystrophy. The COVID-19 pandemic has caused dramatic changes across the country, and as healthcare workers and researchers interested in muscular dystrophy it is vitally important we understand the impact of these changes on people with muscular dystrophy. Your participation in this survey can help us better understand what, if any, impact this has had on you and your life, and help us target our care efforts where they are most needed for people with muscular dystrophy.  The survey will ask questions about your diagnosis, how COVID-19 and the social policies in place to combat it may affect your condition and the care you receive, and about your perceived stress during the pandemic.

This research is being conducted by the University of Rochester

Study Investigator: Rabi Tawil, MD

Study Title: A Patient-Focused Survey to Assess the Effects of the COVID-19 Pandemic on Patients with Muscular Dystrophy

Please review this Information Sheet. If you are interested in participating, please follow the link below to fill out a 20-minute survey online. Filling out this survey will help us provide better care for our patients by discovering better or alternative ways to treat and care for people with muscular dystrophy and to provide them better access to care in the future.

If you have any questions, please contact Leann Lewis at the University of Rochester, leann_lewis@urmc.rochester.edu.

Take the survey

Click the link below. If it does not direct you to the survey, copy and paste the link into your preferred web browser.

https://redcap.urmc.rochester.edu/redcap/surveys/?s=8XLPYCKJ9W

We’d like to express our gratitude to Leann Lewis for developing this survey and shepherding it through the IRB. Thank you for your consideration in participating in this important study.

Sincerely,

Rabi Tawil, MD, Jeffrey Statland, MD, and Nicholas Johnson, MD