We held an NFXF Webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Purdue University is conducting a research study to learn about how genetic, biological, nutritional, and environmental information relates to health and development in Fragile X syndrome.
The Spatial Development Lab at Montclair State University is conducting a research study to learn about spatial abilities, such as why we sometimes get lost in the environment.
This study is important for later-diagnosed individuals as it creates successful predictive models that can identify cases five years earlier than clinical diagnosis.
Data from 8 unique studies speaks to the necessity of early identification of FXS, which leads to earlier, effective medical and non-medical interventions.
Your summary of the results, including why it matters to you and next steps, from the Dr. Liz Berry-Kravis and Tetra Therapeutics BPN14770 trial results published in Nature Medicine. This was a randomized, double-blind, placebo-controlled, two-period crossover study.
Researchers at The Patrick Wild Centre are asking for your opinion on clinical trials and medications for Fragile X syndrome. Have a say in the future of clinical trials for Fragile X by filling out a 10-minute online survey.
The Development in Neurogenetic Disorders Lab at the University of Illinois at Urbana-Champaign is conducting a research study to learn about what skills support early language development.
When we first launched the registry in November 2020, we weren’t yet able to accept non-U.S. registrants. There’s a lot of regulations and standards to work through on a project like this, but now we are truly living up to our name!
The Patient-Focused Drug Development (PFDD) meeting on Fragile X syndrome is just around the corner! We need caregivers and self-advocates to participate to make this a valuable meeting. This will help you understand what to expect and what the goal is and how to share your story.
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
Cortical Gyrification and Its Relationships With Molecular Measures and Cognition in Children With the FMR1 Premutation
Jun Yi Wang and the study team out of the UC Davis MIND Institute are interested in learning more about the premutation carrier condition in relations to brain development and its impact on cognition. These mental processes impact the higher-level functions of the brain including language, learning new things, and making decisions.