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.
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/
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic.
Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome
Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.
about
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!