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

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

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

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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?

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

The Conference

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* 8. How would you rate the conference overall

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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 
Procysbi & Cystagon with Prof Cairns
Education with Dr Senior
Eye issue with Dr Bishop
Contact lenses with Dr Chauhan
Bone disease with Prof Bacchetta
Exercise with Christian Koppl
Kidney Transplant with Prof Grimm
Pregnancy with Dr Servais
Male fertility with Dr Reda
Research overview with Dr Harrison
Gene Therapy study with Dr Cherqui
CF10 new treatment with Prof Newell
New treatment for ‘nonsense’ gene with Prof Goodyer
Urine test for kidney testing with Prof Sarwal
Expert Panel

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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
Procysbi & Cystagon with Prof Cairns
Education with Dr Senior
Eye issue with Dr Bishop
Contact lenses with Dr Chauhan
Bone disease with Prof Bacchetta
Exercise with Christian Koppl
Kidney Transplant with Prof Grimm
Pregnancy with Dr Servais
Male fertility with Dr Reda
Research overview with Dr Harrison
Gene Therapy study with Dr Cherqui
CF10 new treatment with Prof Newell
New treatment for ‘nonsense’ gene with Prof Goodyer
Urine test for kidney testing with Prof Sarwal

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* 11. Please rate the Expert Panel

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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?

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

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

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

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

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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)

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
French
German
Italian
Spanish
Russian
Turkish

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

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

 Future cystinosis conferences and events

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

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

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

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

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

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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.
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