Treatment Guidelines & Recommendations
The professionals who are part of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC) and who are committed to the well-being of the Fragile X community, along with the parents on the consortium’s Executive Council, diligently update the treatment guidelines and recommendations (aka, consensus documents) that were first drafted in 2011.
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 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 parents and other family members (and in the case of some documents, by patients), and shared by those parents/families/patients with their own care professionals.
As a result, the documents are not formal scientific papers. They are expert consensus 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 consensus 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.
|April 2018||FXTAS||Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)||HTML|
|Oct 2012||FXPOI||Fragile X-Associated Primary Ovarian Insufficiency (FXPOI)|
|Oct 2012||FXS||Seizures in Fragile X Syndrome|
|Oct 2012||FXS||The Use of Complementary and Alternative Therapies in the Treatment of Fragile X Syndrome|
|Nov 2014||FXS||Autism Spectrum Disorder in Fragile X Syndrome|
|Sept 2013||FXS||Educational Guidelines for Fragile X Syndrome: Middle and High School Students|
|Oct 2012||FXS||Hyperarousal in Fragile X Syndrome|
|May 2014||FXS||Sensory Processing and Integration Issues in Fragile X Syndrome|
|Oct 2012||FXS||Assessment of Fragile X Syndrome|
|Oct 2012||FXS||Educational Guidelines for Fragile X Syndrome: Preschool Through Elementary Students|
|Oct 2012||FXS||Sleep in Children with Fragile X Syndrome|
|Oct 2012||FXS||Behavior Problems in Fragile X Syndrome|
|Oct 2012||FXS||Financial Resources for Individuals with Fragile X Syndrome|
|Oct 2012||FXS||Medications for Individuals with Fragile X Syndrome|
|Sept 2013||FXS||Educational Guidelines for Fragile X Syndrome: General|
|March 2018||FXS||Genetic Counseling & Family Support||HTML|
|Oct 2012||FXS||Physical Problems in Fragile X Syndrome|
|Oct 2012||FXS||Toileting Issues in Fragile X Syndrome|