FORWARD-MARCH is the next step following a research study called FORWARD (Fragile X Online Registry With Accessible Research Database) that was started in 2012. The FORWARD study created the largest database of information on fragile X syndrome (FXS) in the United States. 25 peer-reviewed journal publications have resulted from FORWARD data, and many more papers are being developed.
The FORWARD-MARCH (Multiple Assessments for Research Characterization) project will collect more detailed information from participants with FXS and add it to the existing FORWARD database. FORWARD-MARCH continues the mission of FORWARD to better understand FXS in order to improve the lives of children and adolescents with FXS and the lives of their families.
Information collected from families like yours will be used to develop best practice guidelines for the care of individuals with FXS around the world!
This project was made possible by Cooperative Agreement 1 U01DD001298-01-00 from the Centers for Disease Control and Prevention.
Who can participate?
Only individuals with FXS born between 2003-2017 are eligible to participate in FORWARD-MARCH. This includes participants who were previously enrolled in the FORWARD study and those new to FORWARD.
What will happen in this study?
The FORWARD-MARCH project will collect survey data from parents and caregivers and conduct several tests with participants to understand their cognition (thinking), language, behavior, and autism characteristics. About two years after your clinic visit for FORWARD-MARCH, we will ask you to repeat the same questionnaires and tests and make a clinic visit. This is because information is expected to change somewhat over time. This will help us learn how individuals with FXS change over time and as they age.
You will receive a summary of your testing results from the assessments and can use these as needed to complement or inform school evaluations, or for other social or disability programming.
Families who want to join FORWARD-MARCH should contact their nearest Fragile X clinic. Look for “This clinic participates in the FORWARD-MARCH study at the bottom of each clinic listing. Not all clinics participate in the study.
The CDC and Fragile X Syndrome
The CDC is working to learn more about Fragile X syndrome and Fragile X-associated disorders to improve the health and well-being of people with these conditions.
FORWARD Registry & Database
Learn more about FORWARD, the CDC, and virtual participation.