Consensus Documents

///Consensus Documents
Consensus Documents 2018-11-12T16:35:27+00:00

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.

Consensus Documents

Date FXD Title HTML PDF
Oct 2012 FXS Assessment of Fragile X Syndrome PDF
Nov 2014 FXS Autism Spectrum Disorder in Fragile X Syndrome PDF
Oct 2012 FXS Behavior Problems in Fragile X Syndrome PDF
Oct 2018 FXS Educational Guidelines for Fragile X Syndrome: General HTML PDF
Sept 2013 FXS Educational Guidelines for Fragile X Syndrome: Middle and High School Students PDF
Oct 2012 FXS Educational Guidelines for Fragile X Syndrome: Preschool Through Elementary Students PDF
Oct 2018 FXPOI Fragile X-Associated Primary Ovarian Insufficiency (FXPOI) HTML PDF
April 2018 FXTAS Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) HTML PDF
Oct 2012 FXS Financial Resources for Individuals with Fragile X Syndrome PDF
March 2018 FXS Genetic Counseling & Family Support HTML PDF
Oct 2012 FXS Hyperarousal in Fragile X Syndrome PDF
Oct 2012 FXS Medications for Individuals with Fragile X Syndrome PDF
Oct 2012 FXS Physical Problems in Fragile X Syndrome PDF
Oct 2012 FXS Seizures in Fragile X Syndrome PDF
May 2014 FXS Sensory Processing and Integration Issues in Fragile X Syndrome PDF
Oct 2012 FXS Sleep in Children with Fragile X Syndrome PDF
Oct 2012 FXS The Use of Complementary and Alternative Therapies in the Treatment of Fragile X Syndrome PDF
Oct 2012 FXS Toileting Issues in Fragile X Syndrome PDF