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.

A study on height and body mass index in Fragile X syndrome suggested that height growth decreases with age and is slightly but significantly lower than the general population by adulthood. Weight and BMI increased with age and were quite a bit higher than the general population by adulthood. Antipsychotic use was associated with higher BMI, while stimulants and anticonvulsants were associated with lower BMI. This suggests that the deficit in physical activity in Fragile X syndrome identified in FORWARD may play a role in high BMI.


Choo, T-H, Xu, Q, Budimirovic, D, et al. Height and BMI in fragile X syndrome: A longitudinal assessment. Obesity (Silver Spring). 2022; 30: 743– 750. doi:10.1002/oby.23368

Woman in protective glasses looking forward and upAbout 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
  • Young boy at a desk with a mosaic background.

Mosaicism in Males with Fragile X Syndrome

By |Dec 28, 2021|

FORWARD // Participants with methylation mosaicism tended to have less severe intellectual disability and better social and functional skills. Knowing more about how FXS differs in people with and without methylation mosaicism may eventually help guide expectations and treatment of individuals with FXS.

Featured image by Maddy Mazur from Pixabay