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.
Attendance at Fragile X Specialty Clinics: Facilitators and Barriers
Abstract
The objectives were to describe the demographic characteristics of children with Fragile X syndrome (FXS) and to determine predictors of attendance at Fragile X (FX) clinics. Findings from the Community Support Network (CSN) and Our Fragile X World (OFXW) samples showed that children who attended FX Clinics were mostly male, high-school aged or younger, and white, non-Hispanic. Using logistic regression models, awareness about FX Clinic services, guardian education, and income (CSN), and child age, family income, and total number of co-occurring conditions (OFXW) were predictors of clinic attendance. Demographic and child characteristics accounted for a large portion of the explained variance. Importantly, symptom severity and parent knowledge about services were independent predictors beyond the demographic characteristics of families.
Kidd SA, Raspa M, Clark R, Usrey-Roos H, Wheeler AC, Liu JA, et al. Attendance at fragile X specialty clinics: facilitators and barriers. Am J Intellect Dev Disabil. (2017) 122:457–75. doi: 10.1352/1944-7558-122.6.457
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
Factor Structure of the Aberrant Behavior Checklist in Fragile X Syndrome
FORWARD // 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.
Opinion Article: Autism Terminology and Clinical Practice
FORWARD // The simplified diagnosis of ASD, which merged previous diagnoses into a single disorder, has led to its use in plural (autism spectrum disorders) for different purposes.