Learn more about important changes to the Tetra trials from Dr. Liz Berry-Kravis

By Hilary Rosselot

Tetra Therapeutics, a Shionogi Group Company, is running trials on BPN14770 (zatolmilast) in adult and adolescent males with full mutation Fragile X syndrome.

Dr. Liz Berry-Kravis has some important updates to share about the Tetra trials that make participation easier! Read on to learn more.

Picture that reads, "Participation made easier: An update from Dr. Liz Berry Kravis" with the Tetra Therapeutics logo.

In summary:

  • All studies will now have remote visits. Onsite visits will be reduced from 6 visits to 4 in-person visits with the help of home nursing visits. Note: The nursing and travel services being implemented depending on institutional approval. Everyone is moving as quickly as possible!
  • Participants will have access to fully coordinated travel services at no cost to families.  All travel for onsite visits is paid for and scheduled by the travel service.
  • Starting in January, the adolescent study age minimum will drop to 9 years-old, with a minimum weight of 55 pounds (25 kg).
  • The open label extension study has been extended to 2 years. The total number of clinic visits has been reduced to 6 over the 2-year span, which includes the rollover visit on the same day the participant completes their initial study.
learn more

Learn more and contact a site near you by visiting the MyFXResearch post and completing the contact form at the bottom of the post: https://fragilex.org/opportunities-for-families/tetra-bpn14770/

  • Observable symptoms of anxiety in individuals with Fragile x syndrome.

Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives

Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.

about
Author Hilary Rosselot

Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!