Treatment and Intervention Recommendations for Fragile X
The professionals who are part of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC) regularly review and update, as needed, the Fragile X treatment recommendations.
Consensus-based recommendations develop over time, as people work with more and more children and more and more adults for a consensus to develop what works and what doesn’t. In many ways, consensus is synonymous with “professional opinion.” Coming to consensus takes time and thoughtfulness, involving much discussion and a critical review of the literature that already exists regarding the intervention.
Over time, and thanks to the early support of the FXCRC by the Centers for Disease Control (CDC), and their later support of the ongoing FORWARD Project (a longitudinal, natural history study of Fragile X syndrome), some of the newly edited documents about Fragile X syndrome will include evidence-based recommendations. These are recommendations that are based on the information collected from all the families who participate in FORWARD and other scientific research.
The treatment and intervention recommendations for the three primary Fragile X-associated disorders are written by and for professionals, with the understanding that they will be published online by the NFXF, read by caregivers, parents, and other family members (and in the case of some documents, by patients), and shared by those caregivers, parents, families, and patients with their own care professionals.
As a result, the documents are not formal scientific papers. They are expert recommendation documents and are not referenced in the way published articles would be. This was purposefully done to make them more digestible. Longer reviews are available in the literature for clinicians to read. These recommendation documents help convey the key information quickly and more concisely than a formal literature review.
We will alert our readers as updated documents complete the multi-step, multi-review process and are made available on our website. In the meantime, we wish to extend our most sincere thanks to the many professionals and parents who have given so generously of their time to make these documents available and helpful.
If you’re a parent or caregiver and have questions about the information presented here, we’d love to hear from you! You can reach out to Missy Zolecki using the contact info or our contact form below.
Last Updated: 7/26/2021