Soticlestat or Tak-935

The Soticlestat or Tak-935 is also known as the Skyway Study. This is a Phase 3 clinical research study of an investigational medication for children, teens, and adults diagnosed with Lennox-Gastaut syndrome (LGS) who are currently using 0-3 anti-seizure medications to manage symptoms and are still experiencing seizures. Although it’s an LGS study, it is open to CDD patients with the diagnosis. For those who currently have not received the diagnosis, it can be determined by viewing previous EEG scans.

The investigational medication, Soticlestat, functions differently than currently approved medications and is being tested as an add-on therapy in the clinical research study.

It is a 6-month double blind study, so some patients will receive the treatment while others will receive a placebo. To learn more about the study please click here.

Canada will be hosting three clinical trial sites for the study drug Soticlestat. This study is now recruiting patients for phase 3 at the Hospital for Sick Children in Toronto, Alberta Children’s Hospital, and Child and Family Research Institute in British Columbia.

For more information please click here. 

Ultragenyx  UXO55 – Investigational Gene Therapy Program for CDD

We are pleased to share with you the UX055 Patient Advocacy Update from Ultragenyx. Please click here to view the full letter from Kristin Voorhees, Director of Patient Advocacy. Their team is working hard on our children’s behalf and we are so happy to share their progress with you!

Be the first to find out about more opportunities like this in Canada, by joining our Canadian registry, Link Canada.