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
Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome
Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.
Long-Term Follow-Up of Telehealth-Enabled Behavioral Treatment for Challenging Behaviors in Boys with Fragile X Syndrome
This study showed the significant impact that behavioral treatments can have on rates of challenging behaviors commonly exhibited by boys with FXS, particularly when parents are coached to implement the intervention with their child via telehealth.
Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome
Some caregivers and parents of individuals with FXS have given CBD supplements to the individuals they care for and learning about their insights and experiences is important. This was the first study to learn more about their observations and opinions regarding CBD to treat FXS.
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.