COVID-19 IGA & European GD Network Gaucher Research Survey

We need your help

We are living in unprecedented times with the spread of COVID-19. Our wonderful healthcare staff, medical researchers and scientists are working flat out to cope with the impact and develop vaccines and treatments to defeat the new virus. We know some therapy studies have already started. As you will know, some Gaucher patients have been identified as in a vulnerable category and may have to self-isolate with the ensuing impact on family, friends and everyday life. Doctors have told us they would very much like to understand better how the virus is affecting our members.

How you can help
This is an initiative from the clinical community, and we have a unique opportunity to help healthcare professionals to understand the impact of the disease on Gaucher patients, their families and supporters and to provide invaluable research data with the intention of benefiting Gaucher patients.

What we would like you to do
We are inviting everyone to take part in a survey, which will be left open for the foreseeable future. If you feel you have the virus we would particularly like your input, but the survey is open to all Gaucher patients.

Why is the IGA involved?
Our aim is to bring together everyone with an interest in Gaucher and to bridge the gap between the clinical and scientific aspects of the disease. Treating Gaucher doctors are very keen for data on the impact of the virus on our community and have asked for our help. We have developed a survey to gather this data on their behalf.

How will this data be used?
This survey has been created by the IGA and the European Gaucher Disease Network and the GDN is the data controller. Data collated from this survey will be shared with the European Gaucher Disease Network but will not be used to send further marketing information to you.

We would be delighted if you feel able to help. Thank you.

Best wishes and stay safe

Tanya Collin-Histed

*All questions marked with an asterisk are required

Thank you for taking the time to share your experiences with us. The questionnaire should take about 10 minutes to complete. Your responses will be confidential and we will not collect any identifying information such as your name, email address or IP address. All data is stored in a password protected format.

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* 1. Please indicate your agreement to participate in this survey by checking the statements below:

I understand the purpose and nature of this survey and I am participating voluntarily.

I understand that I can withdraw from the survey at any time without any penalty or consequences.

I grant permission for the anonymous data generated from this survey to be shared and used in publications.

I agree to participate in this survey.

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* 2. Please tell us which country you live in

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* 3. Hospital caring for you

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* 4. Consultant caring for you

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* 5. Are you

Type 1 patient

Type 2 patient

Type 3 patient

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* 6. Date survey completed

Date

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* 7. Your age as of today?

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* 8. Are you currently employed?

Yes

Employment description:

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* 9. Have you received communication (text/letter/phonecall) from the government or national healthcare provider (e.g. NHS in United Kingdom) to say that you are vulnerable and at risk of severe illness if you catch coronavirus?

Yes

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* 10. Did you receive the seasonal flu vaccine within the last 6 months?

Yes

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* 11. Have you recently had symptoms of coronavirus infection? (If no please proceed to question 15)

Yes

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* 12. If you answered 'Yes' to Q10; on which date did these symptoms start?

Date

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* 13. What were the commonest symptoms you experienced? Tick all that apply

high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)

new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)

loss or change to your sense of smell or taste – this means you've noticed you cannot smell or taste anything, or things smell or taste different to normal

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* 14. Following on from Q12, who did you contact (tick all that apply)

Primary care provider

Hospital landline emergency number

Online resource

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* 15. Was it

Helpful

Not helpful

Why did you think it was helpful/unhelpful?

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* 16. Have you had a coronavirus swab taken?

Yes

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* 17. If you answered 'Yes' to Q15; what date was the swab taken?

Date

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* 18. What was the result? (If you haven't received the results yet, please indicate this using the 'other' option)

Positive

Negative

Other (please specify)

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* 19. If you tested positive for COVID-19, what happened to you (tick as many as possible):

I was able to stay at home and recover without any intervention

I was admitted to hospital and received medication to help me recover

I was admitted to hospital and received oxygen

I was admitted to hospital and was put on a ventilator

Other (please specify)

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* 20. Have your routine appointments at the hospital been disrupted by the coronavirus outbreak?

Yes

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* 21. Due to COVID19 did you decide not to attend any routine appointments?

Yes

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* 22. Are you on active treatment for Gaucher disease at the moment?

Yes

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* 23. What treatment do you receive?

ERT

SRT

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* 24. Has your treatment been disrupted/suspended as a result of your isolation or hospital visit changes?

Yes

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* 25. Have you self-isolated?

Yes

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* 26. On whose advice did you self-isolate? (tick all that apply)

Healthcare professional

Own

Government body

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* 27. How many people are in the household with you 'self-isolating'?

Myself alone

More than 4

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* 28. Do you have any other health conditions? (tick all that apply)

Asthma

High blood pressure

Obesity

COPD

Cancer

Heart disease

Diabetes

Kidney impairment

Other (please specify)

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* 29. If you are self-isolating, are you able to get food and/or prescriptions delivered to you?

Yes

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* 30. Did you stock up with food prior to self-isolating?

Yes

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* 31. On a scale of 1 (lowest) to 10 (highest) how concerned are you about the coronavirus outbreak?

What type of concerns have you had?

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* 32. From where are you getting the best medical updates/information on issues relating to COVID19? (tick all that apply)

Online resources

News channels

Support groups/forums

Government/National healthcare provider source

Doctor/Hospital

National Gaucher patient associations, the IGA, etc.

Other (please specify)

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* 33. If you receive ERT, is it at hospital or at home?

At hospital

At home

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* 34. Are you concerned about your health much more than usually?

Yes

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* 35. Do you feel so sad and depressed that nothing could cheer you up? If you answer yes to this question please talk to your doctor about how you are feeling.

Yes

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* 36. Do you feel exhausted?

Yes

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* 37. Do you feel calm and happy

Yes

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* 38. Will you consent/accept to be vaccinated as soon as the anti-COVID19 vaccine is available, or do you have any concerns for vaccination?

I have no concerns and I will be immediately vaccinated

I have some concerns and I will wait for a period of time to see the safety and efficacy of vaccination

I will not consent to be vaccinated

Thank you for taking the time to complete this questionnaire: we will share a report on the results of the survey with the Gaucher community afterwards...