Introduction

The peak genetic, undiagnosed and rare disease (GUARD) groups, representing over one hundred patient support organisations in Australia, would like you to take part in a short survey about how COVID 19 (coronavirus) is affecting you and your family. The purpose is to understand the type of issues that you are having and how significant they are during this period.

Your responses are anonymous and will remain confidential. We will use summarised information to provide targeted education, advocacy, support and services on behalf of the genetic, undiagnosed and rare disease community. You must live in Australia and be over 18 years of age to participate. The survey should only take 10 minutes to complete and will close on Wednesday 27 May 2020.

Thanks for taking the survey.

Genetic and Rare Disease Network (WA)

Syndromes Without a Name (SWAN) Australia

Genetic Support Network Victoria (GSNV)

Genetic Alliance Australia

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* 1. Please provide your postcode (optional)

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* 2. Please select the main category that applies to you

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* 3. Please let us know the language you speak at home

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* 4. Please select your age group below

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* 5. If you are a carer or family member of someone with a genetic, rare or undiagnosed condition, how old is that person?

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* 6. Do you believe you are at increased risk of COVID-19 (coronavirus) because of your undiagnosed, genetic or rare condition?

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* 7. If you answered Yes to Q7, why do you believe you are at increased risk?

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* 8. How worried are you about COVID-19 (coronavirus?)
(1 - Not very, 5 - Extremely)

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* 9. How much has COVID-19 (coronavirus) impacted you and/or your family?
(1 - Not very, 5 - Extremely)

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* 10. Have you experienced challenges getting medicine as a result of COVID-19 (coronavirus)?

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* 11. If yes to Q11, what was the challenge with getting the medication? (Select all that apply)

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* 12. Have you or your family experienced any challenges getting medical supplies or devices due to the COVID-19 (coronavirus) situation?

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* 13. What medical supplies, services or devices have you had challenges getting? (Select all that apply)

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* 14. Are you concerned with future medication and medical supply shortages as a result of COVID 19?

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* 15. Has your GP or specialist contacted you about COVID 19 (coronavirus) and your genetic, rare or undiagnosed condition?

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* 16. If you are comfortable with providing this information please let us know what your rare disease is

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* 17. Have you (a family member, or someone you care for) had a medical appointment cancelled due to COVID-19 (coronavirus)?

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* 18. Have you (a family member, or someone you care for) been offered a visit with the doctor over the telephone or via a video call as an alternative to an in-office appointment?

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* 19. Would you continue to use telehealth for appointments with health professionals in future?

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* 20. Have you (a family member, or someone you care for) with a genetic, rare or undiagnosed condition experienced any challenges with accessing medical care or treatment?

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* 21. What medical care or treatment have you had challenges accessing?
(Examples: Home infusion, clinical trial, dialysis, delayed test results, postponed procedures, psychosocial/mental health services)

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* 22. Have you had to limit or stop support workers coming to your home due to COVID 19 who provide care or support for someone living with you that has a genetic, rare or undiagnosed condition.

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* 23. Are your allied health appointments being offered through telehealth

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* 24. If you have used telehealth, how did you find the telehealth experience?

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* 25. Have you (a family member, or someone you care for) needed to seek urgent care or visited the hospital emergency department in relation to your undiagnosed, genetic or rare condition during the COVID-19 outbreak?

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* 26. If your essential treatment requires a visit to hospital or a health service

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* 27. Have you accessed mental health services as a result of distress related to COVID 19? 

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* 28. Has your household been impacted by a loss of income due to coronavirus (COVID-19)?

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* 29. Did this change in employment result in the loss of health insurance?

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* 30. Are you able to find easy to understand information about COVID-19 (coronavirus)?

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* 31. Please tell us where you are getting your information about COVID-19. (Select all that apply)

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* 32. Are you overwhelmed by the information you are receiving?

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* 33. What questions do you have about COVID-19 (coronavirus) that you would like answered?

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* 34. What resources would be helpful to you related to navigating care and support during this time?

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* 35. Do you have any other concerns or comments related to COVID-19 (coronavirus) that you want to share with GUARD

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* 36. If you would like to share any genetic, undiagnosed or rare condition experiences please feel free to write them here

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