LGMD2A/R1 Participants Sought for COVID-19 Survey

Coalition to Cure Calpain 3 is sharing the following communication from the University of Rochester regarding a voluntary research survey to be completed by those living with LGMD2A/R1, a form of calpainopathy, or by their caregivers.

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

We are reaching out to people in the Coalition to Cure Calpain 3 community 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 world, 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.

PLEASE CLICK HERE TO REVIEW AN IMPORTANT INFORMATION SHEET PRIOR TO PROCEEDING TO THE SURVEY

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. This survey can be completed until Friday, March 5, 2021. Thank you for your consideration in participating in this important study. 

Sincerely,

Dr. Rabi Tawil, University of Rochester, Department of Neurology

CLICK HERE TO BE DIRECTED TO THE SURVEY

Questions? Click here to send an email to Leann Lewis at the University of Rochester