Introduction

Thank-you for taking the time to complete this survey. This survey is being administered by the International Association for Muscle Glycogen Storage Disease (IamGSD).

Your feedback is important to us so that we can better understand YOUR experience related to the current COVID-19 pandemic, including your experiences over the past weeks and your concerns about the upcoming weeks. 

The survey will take approximately 5-10 minutes of your time to complete.

All survey responses will be completely anonymous. If you have any questions about the survey, please contact Stacey Reason at stacey.reason@iamgsd.org. Completion of the survey implies your consent to be included as an anonymous participant in this survey.

Respondents must be 18 years or older to complete for themselves, or on behalf of someone else including children with a Muscle GSD.


Thank-you for your time...

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* 1. In what country do you live?

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* 2. Please select the category that best describes you.

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* 3. Which Muscle GSD have you (or the person with a Muscle GSD) been diagnosed with?

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* 4. Please select the age group you (or the person with a Muscle GSD) is in.

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* 5. Are you (or the person with a Muscle GSD) an ESSENTIAL WORKER (as defined by your government)?

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* 6. If you (or the person with a Muscle GSD) are an ESSENTIAL WORKER (as defined by your government) - are you having to work outside the home?

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* 7. If you are an ESSENTIAL WORKER (as defined by your government) and are working outside the home, are you concerned about contracting COVID-19?

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* 8. What protective measures (as designated by your government) have you (or the person with a Muscle GSD) incorporated into your (their) daily routine?  (choose ALL that apply).

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* 9. How has COVID-19 affected your (or the person with a Muscle GSD) overall emotional well-being? (choose all that apply)

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* 10. To what extent has COVID-19 affected your emotional well-being?

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* 11. If you are feeling more anxious / worried, do you feel your muscles are more tense, or have you had more cramps than you usually do?

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* 12. How much has COVID-19 impacted you and your family?

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* 13. Have you been able to maintain gentle aerobic exercise during this COVID-19 pandemic?

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* 14. What kind of gentle aerobic exercise are you doing?

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* 15. To what extent has COVID-19 affected your (or the person with a Muscle GSD) ability to access healthcare?

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* 16. Have you (or the person with a Muscle GSD) had a medical appointment cancelled or postponed due to COVID-19?

  Yes No Not Applicable
Family Doctor
Muscle GSD Specialist
Other Specialist

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* 17. Have you (or the person with a Muscle GSD) been offered an appointment over the telephone or via a video call as an alternate to an in office appointment?

  Yes No Not Applicable
Family Doctor
Muscle GSD Specialist
Other Specialist

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* 18. Have you (or the person with a Muscle GSD) needed to seek urgent or emergency room care during the COVID-19 outbreak?

  No Yes, was successfully treated Yes, but did NOT due to COVID-19 risk Other
Related to your muscle GSD
Other medical condition

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* 19. Have you (or the person with a Muscle GSD) been diagnosed with COVID-19?   (choose one)

T