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HCU Network America is working to advocate for the variety of formula available for Homocystinuria patients. We would like to know a little about you, your formula habits, as well as what helps you take your formula and what barriers keep you from taking it. 

In this survey, any reference to formula is stated as metabolic formula. 

This survey is sponsored by Nutricia North America. Your identity will remain anonymous unless you choose to disclose your identity at the end of the survey. We appreciate you taking the time to complete this brief survey. 

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* 1. What country do you live in?

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* 2. What state or province do you live in?

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* 3. Are you an adult with HCU or a parent of a child with HCU?

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* 4. If you are an adult with HCU, how old are you?

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* 5. If you are a parent of a child with HCU, how old is the child? 

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* 6. Were you or your child with HCU diagnosed at birth?

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* 7. If no, at what age were you or your child with HCU diagnosed?

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* 8. What clinic do you or your child with HCU attend? Your answer will help us learn how we can help educate clinics. Nothing will be shared with the clinic.

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* 9. Are you or your child using a metabolic formula to manage your HCU?

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* 10. Which metabolic formula(s) do you currently take?

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* 11. On a scale of 1-5 with 1 being terrible, and 5 being "love my formula", please rate the following:

  1 - Terrible 2 3 4 5 - Love my formula
Taste 
Smell
Texture 

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* 12. On a scale of 1-5, with 1 being not important, and 5 being very important, please rate the following formula attributes.

  Not important Very important
Ready-to-drink format
Low in calories
Low volume to drink
Ability to mix-in with other drinks
Tablet format
More flavors of powder

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* 13. What do you believe is missing in the formulas available for individuals with HCU?

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* 14. How does the formula format (gel, liquid or powder) affect you or your child's ability to take it?

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* 15. How often do you or your child skip your/their metabolic formula?

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* 16. What factors play into the reasons for skipping formula?

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* 17. How do you cover the cost of metabolic formula?

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* 18. Do you have trouble accessing (getting a prescription, finding a supplier or receiving) formula?

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* 19. If you have trouble accessing formula, does it affect you or your child's ability to follow the diet?

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* 20. If you could change anything about your formula, what would it be?

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* 21. What type of support and resources would help you or your child drink formula more regularly or help you or your child return to diet?

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* 22. Would you be willing to have a follow up conversation about formula to help us understand more? If yes, please leave your contact details, otherwise leave blank.

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