1 Did you complete this survey in May of 2020?
Yes No
Is this the first time you have completed this survey in 2021?
Yes No
Survey is being completed by:
Myself- I have muscular dystrophy
Caregiver- on behalf of someone with muscular dystrophy
18 years or older
Younger than 18 years
Are you over 18 years of age?
Yes No
What is your current age? (years)
Male
Female
American Indian/Alaskan Native
Asian
Native Hawaiian/Other Pacific Islander
Black
White
More than one race
Unknown/not reported
Ethnicity (Hispanic/Latino?)
Yes No
United States
Canada
Europe
Other
Which state are you currently residing in?
AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY
What European country do you live in?
Austria Albania Belarus Belgium Bosnia Bulgaria Croatia Republic of Cypress Czech Republic Denmark Estonia Finland France Germany Greece Herzegovina Hungary Ireland Italy Kosovo Latvia Lithuania Luxembourg Malta Macedonia Netherlands Norway Poland Portugal Romania Russia Slovakia Slovenia Spain Sweden Switzerland Ukraine United Kingdom
What province do you live in?
Alberta British Columbia Manitoba New Brunswick Newfoundland and Labrador Nova Scotia Ontario Prince Edward Island Quebec Saskatchewan
Do you live alone or with others?
Alone With others
Do you live with others full-time or part-time?
Full time Part time
Which diagnosis do you have?
Myotonic Dystrophy
FSHD
Limb-girdle muscular dystrophy
Other neuromuscular diagnosis
What type of LGMD do you have?
LGMD2A LGMD1B LGMD1A LGMD1C LGMD1D LGMD1E LGMD1F LGMD1G LGMD1H LGMD2B LGMD1B LGMD2C LGMD2D LGMD2E LGMD2F LGMD2G LGMD2H LGMD2I LGMD2J LGMD2K LGMD2L LGMD2M LGMD2N LGMD2O LGMD2P LGMD2Q LGMD2R LGMD2S LGMD2T LGMD2U LGMD2V LGMD2W LGMD2X LGMD2Y
Have you had genetic testing that confirms your diagnosis?
Yes
No
At what age were you diagnosed? (in years)
At what age were your first symptoms? (in years)
Full-time
Part-time
Do not use
1. Have you or someone in your household contracted COVID-19?
Yes No
1a. Self Other household member
1b. Did you test positive for COVID-19?
No Yes Testing not available
1c. How were you medically impacted by contracting COVID-19? (check all that apply)
How were you socially impacted by you contracting COVID-19? (check all that apply)
What symptoms did you experience? (check all that apply)
How long did it take you to recover (no longer have symptoms) from COVID-19?
< 2 weeks
2-4 weeks
>4 weeks
4-8 weeks
>8 weeks
Did not experience symptoms
Did you require respiratory support AFTER being affected by COVID-19?
Yes
No
If yes, did you require respiratory support prior to having COVID-19?
Yes
No
Do you feel that COVID-19 made your muscle disease worse?
Yes
No
Not sure
Do you feel that your muscle disease made your recovery from COVID-19 worse?
Yes
No
Not sure
Do you feel that your muscle disease made your symptoms of COVID-19 worse?
Yes
No
Not sure
2 Many areas have implemented social strategies to deal with COVID-19. What are the current social strategies in place where you live? (check all that apply)
3 What have been your challenges during the COVID-19 pandemic? (check all that apply)
4 Do you feel your muscle disease has changed during the last 6 months? (check one)
Much improved
Slightly improved
No change
Slightly worse
Much worse
5 Did local health policies related to the pandemic impact this change?
Yes
No
6 Do you have increased challenges due to social distancing?
Yes
No
6a If yes, please indicate what those challenges are (check all that apply)
Other challenges from social distancing?
7 Yes
No
7a. If yes, has your exercise changed during the last 3 months?
Increased
Decreased
Unchanged
8. Do you have muscle or joint pain?
Yes
No
8a Rate the intensity of your pain over the last 3 months by sliding to the appropriate number on the line.
8b Do you feel your pain has improved or worsened during the last 3 months?
Much improved
Slightly improved
No change
Slightly worse
Much worse
9 Have you had health care visits rescheduled or cancelled in the last 6 months?
Yes
No
9a If yes, please indicate which treatments were rescheduled or cancelled? (check all that apply)
10 Have you participated in a telemedicine clinic visit (by phone or two-way video)?
Yes No
10a If yes, please indicate which technology was used (check all that apply)
10b If yes, rate how satisfied were you with the telemedicine visit? (0= not satisfied; 10= very satisfied)
11 Would you like to have the option for telemedicine visits AFTER the pandemic?
Yes
No
12 Which type of visit do you or would you prefer?
In-person Telemedicine No preference
13 What would make you more likely to participate in a telemedicine visit? (check all that apply)
14 Are you currently in a research study (drug trial or natural history study)?
Yes
No
14a Has this study been affected by the pandemic?
Yes
No
14b If yes, how has the study been affected due to the pandemic?
Other ways study has been affected?
15 Rate how likely you would be willing to participate in a research study or clinical trial right now:
Not likely
Less likely
Unchanged
More likely
Definitely likely
15a Please explain why you rated your willingness 'not likely' or 'less likely' to participate in a research study or clinical trial right now.
16 Have you been able to manage your stress during the pandemic?
Yes No
17 How have you been managing your stress during the pandemic
1. In the last month, how often have you been upset because of something that happened unexpectedly?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
2. In the last month, how often have you felt that you were unable to control the important things in your life?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
3. In the last month, how often have you felt nervous and "stressed"?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
4. In the last month, how often have you felt confident about your ability to handle your personal problems?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
5. In the last month, how often have you felt that things were going your way?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
6. In the last month, how often have you found that you could not cope with all the things that you had to do?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
7. In the last month, how often have you been able to control irritations in your life?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
8. In the last month, how often have you felt that you were on top of things?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
9. In the last month, how often have you been angered because of things that were outside of your control?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often
10. In the last month, how often have you felt difficulties were piling up so high that you could not overcome them?
0 = Never
1 = Almost Never
2 = Sometimes
3 = Fairly Often
4 = Very Often