Research and Clinical Trials
Please check for updates on your specific Rare at the pages provided. (These can also be found by a drop down menu off this page)
Sometimes Research and Trials can be offered across many rare conditions but are centered more towards certain age or demographics. Please see if any of the following are a good match for you!
CanPKU+ is very active in helping in any we can in order to advancing the Rare 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 Rare. Thank you!
Finding Current Clinical Trials:
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 inform us about what exactly a Natural History Study is.
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.
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.