You are receiving this message because you are (or your child is) registered with the Myotonic Dystrophy Foundation (Myotonic). We are writing to invite you (or your child) to participate in a research study. If you (or your child) have both Myotonic Dystrophy (DM) AND have been diagnosed with COVID-19 and you agree to participate, we would like to invite you to answer the questions that follow this letter.

The purpose of the study is understanding the potential risks and complications stemming from infection with SARS-CoV2 (this is the name of the virus; the disease is called COVID-19), particularly for people with DM. The coronavirus disease 2019 (COVID-19) pandemic has resulted in the reorganization of health-care settings affecting clinical care delivery to patients with DM as well as other inherited muscular dystrophies. How much this public health emergency has impacted the care of patients with DM is unclear but there is some concern that people with DM are at an increased risk for severe effects of COVID-19. We don’t have data to know that. Approximately 600 people will take part in this online study.

If you agree to participate, we would like you (or your child) to complete a survey on his/her diagnosis and symptoms, his/her experiences with COVID and how COVID has affected his/her myotonic dystrophy symptoms. It should take about thirty minutes to complete.

We do not wish to know who you (or your child) are; you will remain anonymous. We will keep the information you provide confidential, however federal regulatory agencies and the University of Iowa Institutional Review Board (a committee that reviews and approves research studies) may inspect and copy records pertaining to this research. You may have already completed this survey in the summer of 2020. We encourage you to participate again at this time if you wish to do so.

If we write a report about this study, we will do so in such a way that you cannot be identified. We will also provide the results of our findings to Myotonic to be distributed to the DM community.

There are no known risks from being in this study, and you will not benefit personally. However, we hope that others may benefit in the future from what we learn as a result of this study.

You will not have any costs for being in this research study.

You will not be paid for being in this research study.

Taking part in this research study is completely voluntary. If you decide not to be in this study, or if you stop participating at any time, you won’t be penalized or lose any benefits for which you otherwise qualify.

If you have any questions about the research study itself or experience a research-related injury, please contact Nicole Kressin, (319)-678-8596 or Nicole-kressin@uiowa.edu, 200 Hawkins Dr. Iowa City, IA 52242. If you have questions about the rights of research subjects, please contact the Human Subjects Office, 105 Hardin Library for the Health Sciences, 600 Newton Rd, The University of Iowa, Iowa City, IA 52242-1098, (319) 335-6564, or e-mail irb@uiowa.edu. To offer input about your experiences as a research subject or to speak to someone other than the research staff, call the Human Subjects Office at the number above.

You may receive up to two more email invitations to complete this survey. A total of three invitations will be sent over 6 weeks.Please complete the survey only once.

Thank you very much for your consideration.

PI: Andrea Swenson, MD

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