Sleep Problems in FXS: A Cross-Sectional Analysis

Amie Milunovich
Amie Milunovich

05 mins read

We are excited to share journal publications like this that resulted from FORWARD data. Many more papers are currently being developed, and the future of Fragile X syndrome research is bright as more data is gathered. FORWARD-MARCH is the next step, and we will collect more detailed information.

Sleep Problems in FXS: Cross-Sectional Analysis of a Large Clinic-Based Cohort

Previous studies have shown that children with Fragile X syndrome exhibit a higher frequency of sleep problems relative to typically developing counterparts. This paper[1] describes an overview of sleep difficulties in children with FXS and their impact on families. The Fragile X Online Registry with Accessible Research Database (FORWARD), including Clinician Report and Parent Report forms, was analyzed for frequency, severity, relationship with behavioral problems, and impact of sleep difficulties in a mainly pediatric cohort.

Findings showed that sleep difficulties are prevalent in children with FXS and, although they tend to be mild, they are associated with behavioral problems and negative impact to families.

Read the article at American Journal of Medical Genetics

About the FORWARD-MARCH Registry & Database

Since 2012, the CDC has funded 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.

Learn more about FORWARD-MARCH and how to participate.

About the Author

Amie Milunovich

Amie joined the NFXF in 2015. She holds a bachelor’s degree in family and consumer science and is a SOCRA certified clinical research professional (CCRP). Amie has over 15 years of experience working in clinical research. She enjoys Bikram yoga, painting, cooking, and spending time with family and friends.

References

1. Budimirovic DB, Protic DD, Delahunty CM, et al. Sleep problems in fragile X syndrome: Cross-sectional analysis of a large clinic-based cohort. Am J Med Genet A. 2022;188(4):1029-1039. doi:10.1002/ajmg.a.62601