PKU Clinical Trials
CanPKU+ is very active in helping in any we can in order to advancing the PKU Tool box by working with clinical trials in order to get more in the tool box.
We celebrate those who participate in these trials for the betterment of all those with PKU. Thank you!
More information for trials that have requested our assistance as they are accepting Canadians:
PTC Therapeutics presents - APHENITY
Synlogic presents - SynPheny
Trials that have advised CanPKU they are accepting Canadians
We thank those who participate in clinical trials for PKU for the betterment of the community.
(Brian Goetz for Palynziq)
John Jr for Kuvan
Rosie Pallone - Kuvan
CommuniKIDS team was thrilled to share the finalized trial results template and “tip sheet” They hope that the template which was developed together will be used widely and will be helpful to youth and their families after participating in a clinical trial. This was officially launched on the CTO website this Friday, May 20th, 2022 on International Clinical Trials Day, where trialists will be able to download the template for their own use to communicate trial results back to youth and their families. They expect it to be available in french by the summer of 2022. They acknowledge and thank those who provided input including 5 youth advisors, Allison, Chloe, Jessica, Rhys, and Samarah, and 8 parent advisors, including Katrina Hill, Karen Ladner Haas, Lynn Mendonza, Ryan LaPointe, Tanya Chute Nagy, and Yan Défossés. This work was supported by the CHILD-BRIGHT KT Innovation Knowledge Incubator grant.
Insightful Moments has produced a ROADMAP for finding a clinical trial.
A site listing all clinical trials over a wide range of countries: https://clinicaltrials.gov/
PTC Therapeutics, one of CanPKU+ Sponsors offers clinical trials via their site: https://clinicaltrials.ptcbio.com/en/
Synlogic, one of CanPKU+ sponsors offers clinical trials via this site: Index (pkuresearchstudy.com)
Clinical Trials Ontario Clinical Trials Ontario| Clinical Trials Ontario (ctontario.ca) for info on trials in Ontario
Participating in Clinical Trials:
Insightful Moments has produced this ROADMAP to suggest questions to ask when looking at participating in a clinical trial
Insightful Moments has produced this ROADMAP for participating in Clinical Trials.
Insightful Moments has produced this ROADMAP for Informed Consent regarding participating in Clinical Trials.
Insightful Moments has produced this ROADMAP for Discovering Wellness - Handling Emotions during the Clinical Trial Process.