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.

Recommendation Documents

TITLE
Click on title to view. If not available, see PDF version.
LAST UPDATED FXD1 PDF
DOWNLOAD
Transition to Adult Services for Individuals with Fragile X Syndrome NEW April 2020 FXS PDF icon with arrow indicating PDF download.
Assessment of Fragile X Syndrome Oct 2012 FXS PDF icon with arrow indicating PDF download.
Autism Spectrum Disorder in Fragile X Syndrome UPDATED Dec 2020 FXS PDF icon with arrow indicating PDF download.
Behavioral Challenges in Fragile X Syndrome Dec 2018 FXS PDF icon with arrow indicating PDF download.
Educational Guidelines for Fragile X Syndrome: General Oct 2018 FXS PDF icon with arrow indicating PDF download.
Educational Guidelines for Fragile X Syndrome: Early Childhood (Birth to 5 Years) Jan 2019 FXS Download the Early Childhood Education and Developmental Guidelines
Educational Guidelines for Fragile X Syndrome: Elementary Students Aug 2019 FXS PDF icon with arrow indicating PDF download.
Educational Guidelines for Fragile X Syndrome: Middle and High School Students Nov 2018 FXS PDF icon with arrow indicating PDF download.
Fragile X-Associated Primary Ovarian Insufficiency (FXPOI) Oct 2018 FXPOI PDF icon with arrow indicating PDF download.
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) Mar 2018 FXTAS PDF icon with arrow indicating PDF download.
Financial Resources for Individuals with Fragile X Syndrome (PDF ONLY) Oct 2012 FXS PDF icon with arrow indicating PDF download.
Genetic Counseling & Family Support Mar 2018 FXS PDF icon with arrow indicating PDF download.
Hyperarousal in Fragile X Syndrome (PDF ONLY) Oct 2012 FXS PDF icon with arrow indicating PDF download.
Medications for Individuals with Fragile X Syndrome
UPDATE COMING 2021
Early 2021 FXS  
Physical Problems in Fragile X Syndrome (PDF ONLY) Oct 2012 FXS PDF icon with arrow indicating PDF download.
Seizures in Fragile X Syndrome (PDF ONLY) Oct 2012 FXS PDF icon with arrow indicating PDF download.
Sensory Processing and Integration Issues in Fragile X Syndrome (PDF ONLY) May 2014 FXS PDF icon with arrow indicating PDF download.
Sleep in Children with Fragile X Syndrome (PDF ONLY) Oct 2012 FXS PDF icon with arrow indicating PDF download.
The Use of Complementary and Alternative Therapies in the Treatment of Fragile X Syndrome (PDF ONLY) Oct 2012 FXS PDF icon with arrow indicating PDF download.
Toileting Issues in Fragile X Syndrome Dec 2019 FXS PDF 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.

Questions?

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.

Hilary Rosselot headshot

Missy Zolecki,
Community Engagement
treatment@fragilex.org
(800) 688-8765

Last Updated: 12/22/2020