If you or your child are diagnosed with Phenylketonuria (PKU), we would appreciate your completion of our PKU Patient-Reported Outcomes Survey. The purpose of this survey is to provide us (clinicians and researchers) with your perspective on what is (or would be) a meaningful outcome for you in response to treatment with Kuvan (Sapropterin Dihydrochloride). We would like to gather information from parents of children with PKU and adult PKU patients, so we can better understand their priorities in treatment outcomes. Patients are the experts when it comes to the outcomes meaningful to them and doctors have so much to learn from their experiences.
If you have questions about the survey, please email Nataliya Yuskiv at [email protected].
Thank you for your interest!
Biochemical Genetics Center, Children’s Hospital of British Columbia