TSA and members of its Medical Advisory Panel are keen to understand more about the health care people living with TSC in Australia receive. This survey will provide much-needed data that might be used to make funding and other applications to try to improve the availability and standard of care available. We would greatly appreciate you taking 5 minutes to complete the survey. All responses will remain  anonymous.

NOTE: This survey is designed to be completed by an adult living with TSC, the carer of an adult living with TSC who is not able to complete the survey themselves or the carer of a child living with TSC.  

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* 1. In which state/territory are you located:

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* 2. Are you:

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* 3. Do you/your child have a family history of TSC?

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* 4. Was your/your child's TSC diagnosed as a result of genetic testing?

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* 5. Have you/your family ever received genetic counselling?

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* 6. Have you/your family ever had pre-pregnancy counselling?

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* 7. If you or your adult child living with TSC is planning a family, are you aware of the following options:

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* 8. Did you know that people living with TSC are advised to have regular scans throughout their lifetime?

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* 9. If you answered yes to Q8, how did you know this?

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* 10. Do you regularly see any medical specialists about your/your child's TSC?

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* 11. If you answered yes to Q10, which specialists have you/your child seen?

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* 12. Do you/your child see each specialist separately or in a one stop dedicated TSC clinic?

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* 13. TSC can affect many parts of the body. Please check the boxes below for any TSC-related problems you/your child has ever had:

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* 14. Are you/your child undergoing regular scans (MRI/CT/Ultrasound) of brain, lungs and kidneys?

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* 15. Have you/your child had any of the following problems from TSC?

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* 16. Are you aware that everolimus (medicine) is available and can reduce the size of benign tumours related to TSC?

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* 17. Do you know sirolimus cream can reduce the size of facial lesions (angiofibroma) of TSC ?

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* 18. Who would you prefer to have co-ordinating your/your child's care for TSC?

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* 19. How would you prefer your/your child's care services to be delivered?

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* 20. Have you ever heard of or attended a TSC clinic?

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* 21. Would you be interested in a statewide service for the care of people living with TSC?

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* 22. How would you rate your current level of knowledge on TSC?

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Genetics
Medical treatments
Surgical treatments
Surveillance requirements

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* 23. Please add any other comments or information about the provision of health care for people living with TSC that you think are relevant.

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