by Amie Milunovich

Two FORWARD papers published in American Journal of Medical Genetics Part A , have been recognized as among the top 10 most-cited papers published during the 2022-2023 period!

a figure climbing a ladder reaching for a star

Thank you to all families who participated in FORWARD, a collaborative effort between the CDC, the National Fragile X Foundation, and multiple other institutions. The CDC funded FORWARD study created the largest database of information on fragile X syndrome (FXS) in the United States. Data from the FORWARD study is being used by researchers to learn about the lives of people with FXS. These findings are shared with other researchers and clinicians. You can find a list of all FORWARD publications to date here.

There is a next step to FORWARD, a project called FORWARD-MARCH. FORWARD-MARCH is collecting more detailed information from participants with FXS and adding it to the existing FORWARD database. FORWARD-MARCH continues the mission of FORWARD to better understand FXS to improve the lives of children and adolescents with FXS.

Individuals with FXS born between 2003-2017 are eligible to participate in FORWARD-MARCH. This includes participants who were enrolled in the FORWARD study and those new to FORWARD.

If you want to join FORWARD-MARCH, please contact the Fragile X clinic nearest you. A majority of the NFXF’s Fragile X Clinical & Research Consortium sites have joined the FORWARD-MARCH effort. A list of participating clinics can be found at Look for “This clinic participates in the FORWARD-MARCH study” at the bottom of each clinic listing. 

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
Author Dan Whiting

Amie Milunovich
Amie joined the NFXF in 2015 and serves as the FORWARD national coordinator. She has eight years of experience coordinating clinical research trials. Amie was a research assistant and research coordinator for numerous clinical trials at several programs. Amie holds a bachelor’s degree in family and consumer science and is a SOCRA certified clinical research professional (CCRP). She enjoys Bikram yoga, painting, cooking, and spending time with family and friends.