2020 Virtual Conference feedback - English

Virtual Cystinosis Conference 2020

Thank you for registering to take part in the Virtual Cystinosis Conference on 25th April. We were amazed and humbled that so many people were able to join us on the day. We are looking for your feedback on what worked and what we could improve to help us meet the needs of our community into the future. We would appreciate if you can please complete this survey to give us some feedback. If you have any queries or would like to share any other comments or feedback, please contact denise.dunne@cystinosis.ie.

About you

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* 1. Are you

An adult with cystinosis

A parent of an adult(s) with cystinosis

A parent of a child/children with cystinosis

A family member/ carer of a child with cystinosis

A healthcare professional

A research professional

A healthcare industry representative

A patient organisation representative

Other (please give details)

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* 2. Did you join the conference on 25th April?

I joined the conference

I did not join the conference

If you did not, please tell us why

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* 3. Which language did you use to listen to/view the conference

English

Dutch

French

German

Italian

Russian

Spanish

Turkish

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* 4. How many devices were connected to Zoom for the conference in your household?

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* 5. How many people, in total, in your household were viewing/listening to the conference?

Conference Preparation

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* 6. How did you find the booking system for registering your attendance?

Not easy

Easy

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* 7. Did you find the emails sent with details of how to access the conference comprehensive and useful?

Yes

Comments

The Conference

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* 8. How would you rate the conference overall

Not useful at all

Somewhat useful

Useful

Very useful

Extremely useful

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* 9. Before the conference, how interested were you in joining each of the sessions?

	Not interested at all	Somewhat interested	Very interested
Cystinosis overview with Prof Levchenko	Cystinosis overview with Prof Levchenko Not interested at all	Cystinosis overview with Prof Levchenko Somewhat interested	Cystinosis overview with Prof Levchenko Very interested
Procysbi & Cystagon with Prof Cairns	Procysbi & Cystagon with Prof Cairns Not interested at all	Procysbi & Cystagon with Prof Cairns Somewhat interested	Procysbi & Cystagon with Prof Cairns Very interested
Education with Dr Senior	Education with Dr Senior Not interested at all	Education with Dr Senior Somewhat interested	Education with Dr Senior Very interested
Eye issue with Dr Bishop	Eye issue with Dr Bishop Not interested at all	Eye issue with Dr Bishop Somewhat interested	Eye issue with Dr Bishop Very interested
Contact lenses with Dr Chauhan	Contact lenses with Dr Chauhan Not interested at all	Contact lenses with Dr Chauhan Somewhat interested	Contact lenses with Dr Chauhan Very interested
Bone disease with Prof Bacchetta	Bone disease with Prof Bacchetta Not interested at all	Bone disease with Prof Bacchetta Somewhat interested	Bone disease with Prof Bacchetta Very interested
Exercise with Christian Koppl	Exercise with Christian Koppl Not interested at all	Exercise with Christian Koppl Somewhat interested	Exercise with Christian Koppl Very interested
Kidney Transplant with Prof Grimm	Kidney Transplant with Prof Grimm Not interested at all	Kidney Transplant with Prof Grimm Somewhat interested	Kidney Transplant with Prof Grimm Very interested
Pregnancy with Dr Servais	Pregnancy with Dr Servais Not interested at all	Pregnancy with Dr Servais Somewhat interested	Pregnancy with Dr Servais Very interested
Male fertility with Dr Reda	Male fertility with Dr Reda Not interested at all	Male fertility with Dr Reda Somewhat interested	Male fertility with Dr Reda Very interested
Research overview with Dr Harrison	Research overview with Dr Harrison Not interested at all	Research overview with Dr Harrison Somewhat interested	Research overview with Dr Harrison Very interested
Gene Therapy study with Dr Cherqui	Gene Therapy study with Dr Cherqui Not interested at all	Gene Therapy study with Dr Cherqui Somewhat interested	Gene Therapy study with Dr Cherqui Very interested
CF10 new treatment with Prof Newell	CF10 new treatment with Prof Newell Not interested at all	CF10 new treatment with Prof Newell Somewhat interested	CF10 new treatment with Prof Newell Very interested
New treatment for ‘nonsense’ gene with Prof Goodyer	New treatment for ‘nonsense’ gene with Prof Goodyer Not interested at all	New treatment for ‘nonsense’ gene with Prof Goodyer Somewhat interested	New treatment for ‘nonsense’ gene with Prof Goodyer Very interested
Urine test for kidney testing with Prof Sarwal	Urine test for kidney testing with Prof Sarwal Not interested at all	Urine test for kidney testing with Prof Sarwal Somewhat interested	Urine test for kidney testing with Prof Sarwal Very interested
Expert Panel	Expert Panel Not interested at all	Expert Panel Somewhat interested	Expert Panel Very interested

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* 10. Please tell us for each speaker how useful you found their presentation

	Not at all useful	A little useful	Useful	Good	Excellent	I did not attend
Cystinosis overview with Prof Levchenko	Cystinosis overview with Prof Levchenko Not at all useful	Cystinosis overview with Prof Levchenko A little useful	Cystinosis overview with Prof Levchenko Useful	Cystinosis overview with Prof Levchenko Good	Cystinosis overview with Prof Levchenko Excellent	Cystinosis overview with Prof Levchenko I did not attend
Procysbi & Cystagon with Prof Cairns	Procysbi & Cystagon with Prof Cairns Not at all useful	Procysbi & Cystagon with Prof Cairns A little useful	Procysbi & Cystagon with Prof Cairns Useful	Procysbi & Cystagon with Prof Cairns Good	Procysbi & Cystagon with Prof Cairns Excellent	Procysbi & Cystagon with Prof Cairns I did not attend
Education with Dr Senior	Education with Dr Senior Not at all useful	Education with Dr Senior A little useful	Education with Dr Senior Useful	Education with Dr Senior Good	Education with Dr Senior Excellent	Education with Dr Senior I did not attend
Eye issue with Dr Bishop	Eye issue with Dr Bishop Not at all useful	Eye issue with Dr Bishop A little useful	Eye issue with Dr Bishop Useful	Eye issue with Dr Bishop Good	Eye issue with Dr Bishop Excellent	Eye issue with Dr Bishop I did not attend
Contact lenses with Dr Chauhan	Contact lenses with Dr Chauhan Not at all useful	Contact lenses with Dr Chauhan A little useful	Contact lenses with Dr Chauhan Useful	Contact lenses with Dr Chauhan Good	Contact lenses with Dr Chauhan Excellent	Contact lenses with Dr Chauhan I did not attend
Bone disease with Prof Bacchetta	Bone disease with Prof Bacchetta Not at all useful	Bone disease with Prof Bacchetta A little useful	Bone disease with Prof Bacchetta Useful	Bone disease with Prof Bacchetta Good	Bone disease with Prof Bacchetta Excellent	Bone disease with Prof Bacchetta I did not attend
Exercise with Christian Koppl	Exercise with Christian Koppl Not at all useful	Exercise with Christian Koppl A little useful	Exercise with Christian Koppl Useful	Exercise with Christian Koppl Good	Exercise with Christian Koppl Excellent	Exercise with Christian Koppl I did not attend
Kidney Transplant with Prof Grimm	Kidney Transplant with Prof Grimm Not at all useful	Kidney Transplant with Prof Grimm A little useful	Kidney Transplant with Prof Grimm Useful	Kidney Transplant with Prof Grimm Good	Kidney Transplant with Prof Grimm Excellent	Kidney Transplant with Prof Grimm I did not attend
Pregnancy with Dr Servais	Pregnancy with Dr Servais Not at all useful	Pregnancy with Dr Servais A little useful	Pregnancy with Dr Servais Useful	Pregnancy with Dr Servais Good	Pregnancy with Dr Servais Excellent	Pregnancy with Dr Servais I did not attend
Male fertility with Dr Reda	Male fertility with Dr Reda Not at all useful	Male fertility with Dr Reda A little useful	Male fertility with Dr Reda Useful	Male fertility with Dr Reda Good	Male fertility with Dr Reda Excellent	Male fertility with Dr Reda I did not attend
Research overview with Dr Harrison	Research overview with Dr Harrison Not at all useful	Research overview with Dr Harrison A little useful	Research overview with Dr Harrison Useful	Research overview with Dr Harrison Good	Research overview with Dr Harrison Excellent	Research overview with Dr Harrison I did not attend
Gene Therapy study with Dr Cherqui	Gene Therapy study with Dr Cherqui Not at all useful	Gene Therapy study with Dr Cherqui A little useful	Gene Therapy study with Dr Cherqui Useful	Gene Therapy study with Dr Cherqui Good	Gene Therapy study with Dr Cherqui Excellent	Gene Therapy study with Dr Cherqui I did not attend
CF10 new treatment with Prof Newell	CF10 new treatment with Prof Newell Not at all useful	CF10 new treatment with Prof Newell A little useful	CF10 new treatment with Prof Newell Useful	CF10 new treatment with Prof Newell Good	CF10 new treatment with Prof Newell Excellent	CF10 new treatment with Prof Newell I did not attend
New treatment for ‘nonsense’ gene with Prof Goodyer	New treatment for ‘nonsense’ gene with Prof Goodyer Not at all useful	New treatment for ‘nonsense’ gene with Prof Goodyer A little useful	New treatment for ‘nonsense’ gene with Prof Goodyer Useful	New treatment for ‘nonsense’ gene with Prof Goodyer Good	New treatment for ‘nonsense’ gene with Prof Goodyer Excellent	New treatment for ‘nonsense’ gene with Prof Goodyer I did not attend
Urine test for kidney testing with Prof Sarwal	Urine test for kidney testing with Prof Sarwal Not at all useful	Urine test for kidney testing with Prof Sarwal A little useful	Urine test for kidney testing with Prof Sarwal Useful	Urine test for kidney testing with Prof Sarwal Good	Urine test for kidney testing with Prof Sarwal Excellent	Urine test for kidney testing with Prof Sarwal I did not attend

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* 11. Please rate the Expert Panel

Not at all useful

A little useful

Useful

Good

Excellent

Did not attend

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* 12. Please tell us your highlight of the Expert Panel

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* 13. Please tell us how you think the Expert Panel could have been improved

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* 14. Did you find the moderation useful?

Yes

Don't know

Comments

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* 15. Do you think the chat text function was useful during the meeting?

Yes

Don't know

Please tell us more

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* 16. Did you find the polling during the conference useful or interesting?

Yes

Don't know

Please tell us more

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* 17. Did you think the breaks were long enough between sessions?

Yes

Don't know

Comments

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* 18. Did you engage on social media during the conference using the #VirtualCystinosis2020 hashtag?

Yes

If no, could you say way?

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* 19. Would you find it useful to have some or all of the following resources after the meeting (please tick all that apply)

Audio recordings of sessions

Video recordings of sessions

Slides presented by the speakers

Questions not answered during the session to be answered and posted online

Please tell us anything else you would find useful

Translation

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* 20. If you used the live interpretation service, how useful did you find it?

	Very poor	A little useful	Useful	Good	Excellent	Did not use
Dutch	Dutch Very poor	Dutch A little useful	Dutch Useful	Dutch Good	Dutch Excellent	Dutch Did not use
French	French Very poor	French A little useful	French Useful	French Good	French Excellent	French Did not use
German	German Very poor	German A little useful	German Useful	German Good	German Excellent	German Did not use
Italian	Italian Very poor	Italian A little useful	Italian Useful	Italian Good	Italian Excellent	Italian Did not use
Spanish	Spanish Very poor	Spanish A little useful	Spanish Useful	Spanish Good	Spanish Excellent	Spanish Did not use
Russian	Russian Very poor	Russian A little useful	Russian Useful	Russian Good	Russian Excellent	Russian Did not use
Turkish	Turkish Very poor	Turkish A little useful	Turkish Useful	Turkish Good	Turkish Excellent	Turkish Did not use

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* 21. Can you please rate the quality of the email translation that you received before the conference:

Poor

Good

Very good

Please share any comments you have

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* 22. Did you use google translate or another online translation service to submit questions to the conference?

Yes

If yes, did you find it easy to use?
If no, could you please explain?

Future cystinosis conferences and events

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* 23. Were there any topics you would have liked to have covered in more depth?

Yes

Please give details

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* 24. Were there any topics that were not included which you would have liked to have been included?

Yes

Please give details

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* 25. Have you attended an in person cystinosis conference in the past?

Yes in Europe

Yes in the US

Yes in another place

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* 26. Would you attend a future online cystinosis conference (even if an in-person conference was taking place?)

Yes

Don’t know

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* 27. Would you prefer to attend a future cystinosis conference

Online

In person

Alternating

Both

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* 28. Would you like to be added to the Cystinosis Network Europe mailing list for future events and updates? If yes, please give your email address below. Your information will be used only by Cystinosis Network Europe for the purpose of keeping you informed about updates relevant to our community. We will not share or sell your data ever.

Insert email address here:

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* 29. If you have any other feedback on the conference, please let us know. If you would like a response, please include your email address.

Thank you for your time in completing this feedback survey. It will help us in creating future meetings for our community. If you have any questions about the Virtual Conference 2020 or the work of Cystinosis Network Europe or Cystinosis Ireland, please contact denise.dunne@cystinosis.ie.