General Information

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* 1. Who is completing this form

*Please note, if you are a parent of 2 or more children with BBS you will need to complete a separate survey for each child.

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* 2. What is the age of the person affected by Bardet-Biedl Syndrome (BBS)?

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* 3. Do you/your child attend the BBS multi-disciplinary clinics?

Question relating to the impact of BBS and Sight Loss

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* 4. How long ago were you/ the person affected by BBS diagnosed?

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* 5. Is the diagnosis genetic or clinical?

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* 6. If you have a genetic diagnosis, please tell us which BBS gene applies to you

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* 7. Are you/ is your child registered as severely sight impaired or sight impaired?

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* 8. Describe your vision/ your child's vision

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* 10. Have you had a kidney transplant?

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* 11. Are you undergoing kidney dialysis?

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* 12. Describe how BBS affects your life/ child's life

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* 14. Tick the boxes to indicate which disability benefits you are in receipt of

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* 15. Tick the boxes to indicate the employment status of the person this survey is about:

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* 17. If you, or your child is no longer in education, please indicate the education level attained:

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* 18. Do you (or does your child) have an Individual Education Plan (IEP)?

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* 19. Do you (or does your child) have an Education, Health and Care Plan (EHCP)?

Services and Support: General
The following questions can be answered from your perspective as a person living with BBS or as a parent of someone with BBS.

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* 20. Which of these statements best describes your/ your child's current situation?

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* 21. What are the emotional and psychological impacts of having BBS? Tick any/ all that apply

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* 22. Please indicate who provided the diagnosis of BBS (if you can't remember leave blank)

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* 24. Do you understand your genetic diagnosis? Tick the box to indicate which statement applies to you

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* 25. How happy are you with the ongoing care you receive from the BBS Clinics service?

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* 27. If you haven't accessed any of the services referred to in Q26, please tell us why

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* 28. Of the services listed below, which have you NOT accessed but would like to?

Services and Support: BBS UK

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* 29. How did you hear about BBS UK?

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* 30. In what ways have you engaged with BBS UK (Tick any/ all that apply)

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* 31. Which of these statements do you agree with? (Tick any/ all that apply)

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* 32. Which of these statements reflect the difference BBS UK has made to you?

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* 34. Which of the following would be of interest (tick all that apply)

Any other comments

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* 35. Please provide any other comments or feedback you have for BBS UK here

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