We are excited to share journal publications like this one resulting from FORWARD data. There are many more papers currently in development, and the future for Fragile X syndrome research is bright as more data is gathered.
Factor Structure of the Aberrant Behavior Checklist in Individuals with Fragile X Syndrome: Clarifications and Future Guidance
The Aberrant Behavior Checklist (ABC) is a standardized rating scale used for assessing problematic behavior of individuals with developmental disabilities. It has five subscales: Irritability, Social Withdrawal, Stereotypic Behavior, Hyperactivity, and Inappropriate Speech.
A previous study in individuals with Fragile X syndrome reported six factors, with the Social Withdrawal factor branching into Socially Unresponsive and Social Avoidance factors, suggesting a different factor structure in people with FXS.
This study questions whether the newer FXS scoring algorithm (6 subscales rather than 5) contributes data that are consistently helpful in evaluating behavior of people with FXS.
In general, the study recommends continued use of the original ABC algorithm for scoring behavior of clients with FXS. However, they acknowledge that there may be circumscribed times when the new algorithm may be appropriate for scoring, namely when anxiety or social avoidance constructs are the central and unequivocal domains of interest.
Michael G. Aman, Megan Norris, Aaron J. Kaat, Howard Andrews, Tse-Hwei Choo, Chen Chen, Anne Wheeler, Carla Bann, and Craig Erickson. Journal of Child and Adolescent Psychopharmacology. Oct 2020.512-521. http://doi.org/10.1089/cap.2019.0177
About the FORWARD-MARCH Registry & Database
Since 2012, the CDC has funded four FORWARD Fragile X studies to expand understanding of Fragile X syndrome. The NFXF has been coordinating study efforts since the beginning and has been vital in ensuring its success.
FORWARD-MARCH is the next step and will collect more detailed information from participants to better understand FXS and improve the lives of children and adolescents with FXS and the lives of their families.
Below are more journal publications resulting from FORWARD data.
more from forward
Mosaicism in Males with Fragile X Syndrome
FORWARD // Participants with methylation mosaicism tended to have less severe intellectual disability and better social and functional skills. Knowing more about how FXS differs in people with and without methylation mosaicism may eventually help guide expectations and treatment of individuals with FXS.
Psychotropic Drug Treatment Patterns in Persons with Fragile X Syndrome
FORWARD // This study contributes to the limited understanding of psychopharmacologic management of IAAS in FXS and will help guide future treatment.