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Sapropterin response testing

What is sapropterin response testing?

Sapropterin  is a new way of medicating Phenylketonuria (PKU), which is a rare but potentially serious inherited disorder.  Before using sapropterin regularly, you will be take part in a ‘trial of responsiveness’ as discussed by your PKU team.

How does sapropterin response testing work?

The response test must demonstrate that we see a reduction in your Phenylalanine levels of at least 30 percent and that your exchanges can be doubled.

This PDF has been designed for you to be able to record your bloodspots and phenylalanine levels.

Please download the Sapropterin response testing PDF here.

Contact us

If you have any questions or concerns, please contact:

Dieticians: Heather, Lucy and Katy on 0114 271 7212.
Nurses: Becky and Jo on 0114 271 7415.

Sapropterin response testing.pdf (633.90 KB)

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Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

Resource number: MB5

Resource Type: pdf

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