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.
Frequently Asked Questions
You will be paid $100 at the completion of each visit to reimburse you for transportation costs and your time to complete the testing and questionnaires.
All FORWARD participants must be enrolled through a clinic. If you or your child has Fragile X and have questions about participating in FORWARD, please contact your Fragile X clinic.
Individuals must have FXS and be born between 2003-2017. All genders may enroll in FORWARD-MARCH.
The parent questionnaires can either be done at the clinic or remotely (using the internet). Completing all these questionnaires is expected to take 1-2 hours.
Your Fragile X Clinic doctor will collect medical information about the participant with FXS for FORWARD-MARCH. This will be standard medical information that is typically collected at clinic visits for medical management of FXS. The participants with FXS will then spend testing time with the psychologist/language specialist and study coordinator. It may take up to approximately 4 hours to complete all the measures and evaluations at the clinic visit.
The study will help facilitate research by allowing clinics to quickly and efficiently identify eligible participants who may be interested in a specific project.
The more individuals who enroll and contribute information, the more helpful the study will become in helping researchers understand FXS across the lifespan. Your family’s participation will help healthcare professionals and educators create better therapeutic and educational programs that could benefit millions of individuals with FXS throughout the world.
Records of participation in this research study will be maintained and kept confidential as required by law. This research project has a Certificate of Confidentiality from the Centers for Disease Control and Prevention that provides additional protection from involuntary disclosure of information collected 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.
Our Most Recent Opportunities
Study: A Family Genetic Study of Autism and Fragile X Syndrome
The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.
Study: Aging in Mothers who Carry the FMR1 Premutation
The University of South Carolina is conducting a research study to learn about healthy aging in women who carry the FMR1 premutation.
Study: iBehavior- A Novel Behavior Tracking App Study for individuals with Fragile X syndrome
The T-PAL Lab at the UC Davis MIND Institute is conducting a research study to learn about how we can best measure your child’s behavioral and cognitive functioning in their day-to-day life. Using an iPhone or Android based mobile app at your convenience, you will record your child’s behavior daily for up to 3 weeks. About the Study Who can participate? Parents with a child 5-17 years old with a [...]
Study: Transitioning to Adulthood with Fragile X syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.