About the Study
Who can participate?
Only individuals with FXS born between 2003-2020 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 the 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.
What are the good things that can happen from this study?
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.
Will I or my child be paid to complete this study?
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.
Frequently Asked Questions
All FORWARD participants must be enrolled through a clinic. However, this could change, please email Amie Milunovich at amie@fragilex.org.
If you or your child has Fragile X and have questions about participating in FORWARD, you can also contact your Fragile X clinic.
Individuals must have FXS and be born between 2003-2020. 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.
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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.
Joining FORWARD
Families who want to join FORWARD-MARCH should contact their nearest Fragile X clinic. Not all clinics participate in the study. Look for this badge in the clinic listings.
