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
Inhibition Deficits Are Modulated by Age and CGG Repeat Length in Carriers of the FMR1 Premutation Allele Who Are Mothers of Children with Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — Older mothers of children with Fragile X syndrome who have mid-range CGG repeats (~80–100) may be at increased risk for difficulties with inhibition.
Language Across the Lifespan in Fragile X Syndrome: Characteristics and Considerations for Assessment
RESEARCH RESULTS ROUNDUP — Describe cognition and language in FXS using the data from a large group, while trying to understand if the standard assessments are feasible (able to be done accurately) and valid (reflect reality) in FXS and then compared the assessment results to caregiver report.
Delineating Repetitive Behavior Profiles Across the Lifespan in Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — What restricted and repetitive behaviors looked like in 154 individuals with FXS, 2–50 years old, based on age, ASD diagnosis, and IQ score.
Pharmacologic Interventions for Irritability, Aggression, Agitation, and Self-Injurious Behavior in Fragile X Syndrome: An Initial Cross-Sectional Analysis
RESEARCH RESULTS ROUNDUP — The psychopharmacologic management of irritability, agitation, aggression, and self-injurious behaviors and drug therapy treatment.
Toilet Training in Fragile X Syndrome
Research Summary // FORWARD data on 633 individuals with FXS filled the gap for much needed information on when children with FXS learn bladder and bowel toileting skills.
Preventive Care Services and Health Behaviors in Children with Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — This research can help identify preventive care services that patients with FXS may need and focus on reaching recommended preventative care objectives.