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/

Study: Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)

The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.

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!