FACT: The primary resource for Fragile X syndrome research is the FORWARD-MARCH Registry and Database.
Also a fact is we can’t do it without you.
We’re on a mission to enroll 600 participants with FXS born in 2003 through 2020. We’re just over halfway there and need your superhero help to hit our target!
FORWARD-MARCH builds upon the original FORWARD study, the largest U.S. database on Fragile X syndrome that launched in 2012. With funding from the CDC, FORWARD-MARCH has teamed up with your local Fragile X specialty clinic to collect detailed information about FXS kids and young adults.
More participants help ensure statistically significant research results and lessen the risk of biased findings. It also helps generalize the findings. In other words, it can show how the results stack up against peers with conditions like autism and understand common co-occurring diagnoses. For clinicians, a sizable database helps them tackle common FXS medical and behavioral challenges.
The bigger the crew, the better we understand FXS, paving the way for awesome therapeutic and educational programs! Watch this important 90-second message from Dr. Elizabeth Berry-Kravis on why we need families to participate.
Why We Need Families to Participate (90 seconds)
Transcript
FORWARD has really accomplished quite a bit. We have 26 journal publications about Fragile X syndrome from FORWARD data with more papers coming out soon.
Some FORWARD publications have been rolled over into providing the evidence base for family-friendly treatment recommendation documents that are posted on the National Fragile X Foundation website and are great resources available to anyone seeking information about existing knowledge and intervention strategies for people with Fragile X.
These documents are really an important resource for families, educators, and medical providers. This information that we’ve collected informs what we tell families and how we optimize management of patients in the clinic on a daily basis. This helps us:
- Understand what medical problems are more common in Fragile X so we can screen for them.
- Provide anticipatory management of sleep and behavior problems if autism is present.
- Understand when to expect kids with Fragile X to toilet train and when you’re going to need to do extra things to get them to accomplish this.
- Understand the trajectory of seizures in Fragile X, when will they start, when will they go away?
These are all things that come from the FORWARD project that help us manage families every day. And not only does this research help us with management of patients in clinic, but it also provides a natural history base that is required for us to understand the long-term effects of new disease-targeted treatments and interventions that we are working on developing.
Share This Study
Share our colorful infographic on your social media or email to friends and family:
Eligibility
Kids with FXS born between 2003 and 2020 are invited to join the study, including original FORWARD participants and fresh faces!
Buzz your nearest Fragile X specialty clinic or reach out to Amie Milunovich at amie@fragilex.org.
For more details about the study, visit Join FORWARD-MARCH.
