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.
Summary
Health-related quality of life (HRQoL) is a multidimensional concept involving physical, psychological, social, and cognitive aspects of life. Individuals with Fragile X syndrome (FXS) experience a life-long disorder that impacts the HRQoL of themselves and their family. Thus, HRQoL may be an important outcome measure following intervention.
However, it is yet not known whether HRQoL concerns relate to observed impairments in FXS. In the present study, we examined the nature and degree of association between HRQoL and established measures of functioning in FXS. A total of 155 parents completed the questionnaires including the PedsQL on their child as part of the larger CDC-funded FORWARD study. Families participated from one of three sites: Cincinnati Children’s Hospital Medical Center, Rush University, and Children’s Hospital of Colorado. We observed significant relationships between HRQoL and measures of adaptive behavior, maladaptive behaviors, and social functioning. The present study has implications for treatment targets for FXS.
Coffman MC, Shaffer RC, Schmitt LM, Dominick KC, Pedapati E, Wang A, Berry-Kravis E, Tartaglia N, Erickson CA. Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome. Brain Sciences. 2020; 10(4):213. https://doi.org/10.3390/brainsci10040213
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
Predictors of Attendance at Fragile X Clinics
Research Summary // Samples showed that children who attended Fragile X clinics were mostly male, high-school aged or younger, and white, non-Hispanic.
Cliniciansʼ Experiences with the Fragile X Clinical and Research Consortium
Research Summary // Suggestions for improvement included additional financial support and increased utilization of collected patient data for research purposes.
Featured image by Yatheesh Gowda from Pixabay