Metabolic Support UK: Understanding Parents' experiences of Transition
Thank you for taking the time to complete this survey which has been designed to help us understand the experiences of parents during a young person’s transition from paediatric to adult care.

If you're not a parent of a patient with an Inherited Metabolic Disorder, or your child hasn't yet completed their transition, please don't complete this survey but feel free to get in touch using the contact details below to discuss how you might get involved in our research.

This survey is designed to assess both the practical and emotional aspects of transition so we would encourage you to be honest about your experiences, positive and negative. However, please be advised that you are under no obligation to complete the survey and please only disclose whatever you are comfortable with. The survey should take around 30 minutes. Also, in line with privacy guidelines, we ask that you don't name any individuals you might discuss in your answers.

At the end you will be given the option to take part in any potential follow up research but should you have any questions or concerns, please don’t hesitate to contact a member of the Metabolic Support UK team at or by calling 0845 241 2173. Alternatively, you can speak to speak to Sally (the NextGen Project Officer) directly at

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