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.
Professional Consensus vs. Evidence-Based 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.
Using the Guidelines
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 caregivers, parents and other family members (and in the case of some documents, by patients), and shared by those caregivers/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.
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|Transition to Adult Services for Individuals with Fragile X Syndrome||April 2020||FXS|
|Assessment of Fragile X Syndrome (PDF ONLY)||Oct 2012||FXS|
|Autism Spectrum Disorder in Fragile X Syndrome (PDF ONLY)||Nov 2014||FXS|
|Behavioral Challenges in Fragile X Syndrome||Dec 2018||FXS|
|Educational Guidelines for Fragile X Syndrome: General||Oct 2018||FXS|
|Educational Guidelines for Fragile X Syndrome: Early Childhood (Birth to 5 Years)||Jan 2019||FXS|
|Educational Guidelines for Fragile X Syndrome: Elementary Students||Aug 2019||FXS|
|Educational Guidelines for Fragile X Syndrome: Middle and High School Students||Nov 2018||FXS|
|Fragile X-Associated Primary Ovarian Insufficiency (FXPOI)||Oct 2018||FXPOI|
|Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)||Mar 2018||FXTAS|
|Financial Resources for Individuals with Fragile X Syndrome (PDF ONLY)||Oct 2012||FXS|
|Genetic Counseling & Family Support||Mar 2018||FXS|
|Hyperarousal in Fragile X Syndrome (PDF ONLY)||Oct 2012||FXS|
|Medications for Individuals with Fragile X Syndrome||Oct 2012||FXS|
|Physical Problems in Fragile X Syndrome (PDF ONLY)||Oct 2012||FXS|
|Seizures in Fragile X Syndrome (PDF ONLY)||Oct 2012||FXS|
|Sensory Processing and Integration Issues in Fragile X Syndrome (PDF ONLY)||May 2014||FXS|
|Sleep in Children with Fragile X Syndrome (PDF ONLY)||Oct 2012||FXS|
|The Use of Complementary and Alternative Therapies in the Treatment of Fragile X Syndrome (PDF ONLY)||Oct 2012||FXS|
|Toileting Issues in Fragile X Syndrome||Dec 2019||FXS|
|1FXD: Fragile X-associated disorder; FXS: Fragile X syndrome; FXPOI: Fragile X-Associated Primary Ovarian Insufficiency; FXTAS: Fragile X-Associated Tremor/Ataxia Syndrome.|