A Human Forebrain Organoid Model of Fragile X Syndrome Exhibits Altered Neurogenesis
While there is promise for future treatments, utilizing this iPSC brain organoid model for future treatment development could prove to be successful.
Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade
This study shines a light on the need for better long-term support and care planning for individuals with Fragile X syndrome.
Clinical Trial RECONNECT: ZYN002 Gel
This study will evaluate the efficacy and safety of ZYN002, a clear gel that can be applied to the skin (called transdermal application) twice a day for the treatment of behavioral symptoms of Fragile X syndrome (FXS).
Raising Knowledge and Awareness of Fragile X Syndrome in Serbia, Georgia, and Colombia: A Model for Other Developing Countries?
Raising knowledge and awareness of Fragile X syndrome to medical professionals leads to direct benefits for families and individuals.
Parent Clinical Trial Priorities for Fragile X Syndrome: A Best-Worst Scaling
The aim of this study was to determine parents’ main priorities for clinical trials, at a time when the clinical trial opportunities are on the rise.
Congratulations to the 2021 NFXF Summer Scholar Recipients
We asked this year’s four NFXF Summer Scholars — Collis Brown, John Burwinkle, Bonnie McKinnon, and Elizabeth Saoud — to summarize their summer project in a 15-minute video presentation, and here they are!
NFXF Webinar: 2021 Industry Updates
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.
Study: Memory Game in Children with FXS
A study to learn about memory and memory development in children with Fragile X syndrome.
POcKIT Study: At-Home Study for Young Children with FXS
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.
Study: Adolescents and Adults with IDD Needed for a Spatial Abilities Study
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.
AI–Assisted Phenotype Discovery of Fragile X Syndrome in a Population-Based Sample
This study is important for later-diagnosed individuals as it creates successful predictive models that can identify cases five years earlier than clinical diagnosis.
Emergence of Developmental Delay in Infants and Toddlers With an FMR1 Mutation
Data from 8 unique studies speaks to the necessity of early identification of FXS, which leads to earlier, effective medical and non-medical interventions.
Benefit of BPN14770 for Cognition and Daily Function in Fragile X Syndrome
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.
Research Study: Power of the Point — Predictors of Early Language Development in Fragile X Syndrome
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.
How Clinical Trials Work: From Start to Finish
A guide to better understanding of clinical trials, including how they work and how to become a participant.