Consensus Documents on Treatments and Interventions for Fragile X

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 Fragile X 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 guidelines and 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.

Consensus Documents

Click on a title to view the HTML versionLast UpdatedFXD1PDF
Download
Assessment of Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
Autism Spectrum Disorder in Fragile X SyndromeNov 2014FXSPDF icon with arrow indicating PDF download.
Behavioral Challenges in Fragile X Syndrome UPDATEDDec 2018FXSPDF icon with arrow indicating PDF download.
Educational Guidelines for Fragile X Syndrome: General UPDATEDOct 2018FXSPDF icon with arrow indicating PDF download.
Educational Guidelines for Fragile X Syndrome: Early Childhood (Birth to 5 Years) UPDATEDJan 2019FXSDownload the Early Childhood Education and Developmental Guidelines
Educational Guidelines for Fragile X Syndrome: Elementary Students   UPDATEDAug 2019FXSPDF icon with arrow indicating PDF download.
Educational Guidelines for Fragile X Syndrome: Middle and High School Students UPDATEDNov 2018FXSPDF icon with arrow indicating PDF download.
Fragile X-Associated Primary Ovarian Insufficiency (FXPOI) UPDATEDOct 2018FXPOIPDF icon with arrow indicating PDF download.
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) UPDATEDMar 2018FXTASPDF icon with arrow indicating PDF download.
Financial Resources for Individuals with Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
Genetic Counseling & Family Support UPDATEDMar 2018FXSPDF icon with arrow indicating PDF download.
Hyperarousal in Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
Medications for Individuals with Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
Physical Problems in Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
Seizures in Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
Sensory Processing and Integration Issues in Fragile X SyndromeMay 2014FXSPDF icon with arrow indicating PDF download.
Sleep in Children with Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
The Use of Complementary and Alternative Therapies in the Treatment of Fragile X SyndromeOct 2012FXSPDF icon with arrow indicating PDF download.
Toileting Issues in Fragile X Syndrome UPDATEDDec 2019FXSPDF icon with arrow indicating PDF download.
1FXD: Fragile X-associated disorder; FXS: Fragile X syndrome; FXPOI: Fragile X-Associated Primary Ovarian Insufficiency; FXTAS: Fragile X-Associated Tremor/Ataxia Syndrome.