Authors: Kendra E. Gilbertson, Hannah L. Jackson, Eric J. Dziuban, Stephanie L. Sherman, Elizabeth M. Berry-Kravis, Craig A. Erickson, and Rodolfo Valdez
Summary
Only one in four children and young adults with FXS met the physical activity guidance from the U.S. Department of Health and Human Services (HHS), which recommends children 6–17 years-old get one hour of physical activity every day, while adults need about 2.5 hours per week.
Slightly more than half of the children and young adults with FXS met the recommendation for an annual influenza vaccination.
Almost three out of four children and young adults with FXS met dental care guidance from the American Academy of Pediatric Dentistry (AAPD). The AAPD recommends children have their first dental exam at the time of their first tooth eruption, or by one year of age, followed by regular exams every six months for children and adults.
About nine out of 10 children and young adults with FXS received the recommended immunizations between birth and 18 years of age.
Why This Is Important
This research can help clinicians identify preventive care services that patients with FXS may need and focus on educating parents on reaching recommended preventative care objectives.
What Are the Next Steps
Published in Disability and Health Journal, researchers from the Centers for Disease Control and Prevention and other organizations presented FORWARD data on preventive services received by children and young adults with FXS. This research can help clinicians identify preventive care services that patients with FXS may need. This research helps examine the barriers to preventive care as well as further research to help identify vulnerable groups and access to services.
FOR MORE DETAILS VISIT:
more research results
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives
Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.
Neuropsychological Changes in FMR1 Premutation Carriers and Onset of FXTAS
This is the first time that Fragile X premutation carriers have been tracked in a longitudinal study. This study provides evidence for early markers of FXTAS that may be helpful in eventually identifying the best candidates for early, preventive intervention.
The International Fragile X Premutation Registry: Building a Resource for Research and Clinical Trial Readiness
The first published publication from the International Fragile X Premutation Registry Advisory Committee. This International Fragile X Premutation Registry is an important first step and can serve as a useful tool for clinicians and researchers in the field.
The Use of “Retardation” in FRAXA, FMRP, FMR1 and Other Designations
Thanks to The European Fragile X Network, FMR1 now stands for fragile X messenger ribonucleoprotein 1, removing the reference to “mental retardation” which has long been outdated in common vernacular.
Optimal Time Lags From Causal Prediction Model Help Stratify and Forecast Nervous System Pathology
Being able to identify and diagnose possible nervous system disorders by detecting gait problems 15 to 20 years before their clinical diagnosis could help advance treatment development and quality of life.
Prodromal Markers of Upper Limb Deficits in FMR1 Premutation Carriers and Quantitative Outcome Measures for Future Clinical Trials in FXTAS
This system could potentially predict FXTAS onset in premutation carriers who are not showing signs of FXTAS on a neurological exam.