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.
Preventive Care Services and Health Behaviors in Children with Fragile X Syndrome
Summary
Published in the 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.
Key findings:
- Only one in four children and young adults with FXS met the physical activity guidance from the United States Department of Health and Human Service (DHHS). DHHS recommends children 6–17 years of age 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 CDC 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 6 months for children and adults.
- About nine out of ten children and young adults with FXS received the immunizations recommended by CDC between birth and 18 years of age.
Gilbertson K, et al. (2019). Preventive care services and health behaviors in children with fragile X syndrome. Disabil Health J. 12, 564-573
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
Height and Body Mass Index in Fragile X Syndrome: A Longitudinal Assessment
FORWARD // These findings warrant increased attention to obesity prevention for all individuals with FXS.
Longitudinal Trajectory of Seizures in Fragile X Syndrome
FORWARD // This study adds to the understanding of the characteristics, risk factors, and course of seizures in FXS and provides a basis for anticipatory guidance for clinicians and families.