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.
Pharmacologic Interventions for Irritability, Aggression, Agitation and Self-Injurious Behavior in Fragile X Syndrome: An Initial Cross-Sectional Analysis
Behavioral dysregulation, or the impairment of behavioral processes, is common in Fragile X syndrome (FXS). A regularly cited group of behaviors in individuals with FXS, particularly males, is irritability, agitation, aggression and self-injurious (IAAS) behaviors. These behaviors can put a strain on both the individual and their caregiver’s quality of life and there is little information about how to manage these behaviors with medication. This publication in the Journal of Autism and Developmental Disorders presented information from a FORWARD dataset involving 415 individuals with IAAS behaviors. The study describes the psychopharmacologic management of IAAS and examines the characteristics of individuals that are treated with drug therapy for IASS.
Findings showed that among the individuals with FXS that were exhibiting IAAS, those receiving drug treatment were more likely to be older males with significant intellectual disability. The individuals receiving drug treatment were also more likely to have comorbid autism, anxiety, hyperarousal and social impairment. The medications most used in this population are antipsychotic medications, particularly Aripiprazole and Risperidone. Both Aripiprazole and Risperidone are FDA-approved for treating irritability associated with ASD. Individuals were also prescribed drugs outside of antipsychotic medications, including Selective serotonin reuptake inhibitors (SSRIs), stimulants, non-SSRI antidepressants, alpha-agonists, mood-stabilizers, and anxiolytics. Most individuals (63%) did not experience side effects from their drug treatment.
Eckert, E.M., Dominick, K.C., Pedapati, E.V. et al. Pharmacologic Interventions for Irritability, Aggression, Agitation and Self-Injurious Behavior in Fragile X Syndrome: An Initial Cross-Sectional Analysis. J Autism Dev Disord 49, 4595–4602 (2019). https://doi.org/10.1007/s10803-019-04173-z
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
Longitudinal Trajectory of Seizures in Fragile X Syndrome
FORWARD // This study adds to the understanding of the characteristics, risk factors, and course of seizures in FXS and provides a basis for anticipatory guidance for clinicians and families.
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.
Featured image by Maddy Mazur from Pixabay