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How to Join The Canadian PKU Registry

How to sign up for the Canadian PKU Registry

There are 3 steps that must be completed in order to join the patient registry. These registration steps will need to be carried out by the caregiver of the individual (aged 18 years or younger) with PKU. Depending on the child's age and ability, they may also be asked to provide consent/assent. 

 

Registration takes approximately 15-20 minutes. Although the platform is supported on mobile phones and tablets, we recommend that you use a computer/laptop for the registration process. 

PKU Consent Flow Diagram EN Cropped 09Apr2024.png

For those interested in learning more about clinically reported data, please log in to your NORD account after completing the steps above or speak to your clinical care team to learn more.

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