In early 2016, with the goal of collecting data and personal stories for our Patient Organization Submission to the Common Drug Review (CDR), CanPKU launched an in-depth online survey.  Geared at patients and caregivers, and open to people of all nationalities, we were thrilled to receive 297 responses to the survey!  To those of you who took part, thank you!

The results of the survey were indeed submitted to the CDR for their fourth official review of Kuvan. Their recommendations on whether or not this drug should be publicly funded greatly influences – and often determines – whether each individual province/territory will fund this important treatment option for PKU.  Results of the CDR review are expected at the end of the 2016 summer and will be posted when available.

We have summarized the survey results into a one-page document and also a full slideshow. We have also created a summary of the CDR process and timelines for this 2016 review.  You can also review our full submission to the CDR.