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 are written by professionals and include input from multiple Fragile X specialists including parents and other caregivers. The documents are not formal scientific papers and, in most instances, do not include references and citations in the same way as those written for scientific journals. As needed, links are included to any relevant scientific papers as well as other, related treatment recommendations. The recommendations are published online by the NFXF to be read by parents, caregivers and other family members (and in the case of some documents, by patients), and shared with their own care professionals including doctors, therapists, educators and counselors.

Recommendation Documents

Click title for HTML version. If not available choose PDF version. Spanish translations are PDF only. PDF DOWNLOAD OPTIONS
TITLE LAST UPDATED FXD1 ENGLISH SPANISH
Transition to Adult Services for Individuals with Fragile X Syndrome April 2020 FXS PDF icon with arrow indicating PDF download.
An Introduction to Assessing Children with Fragile X Syndrome Dec 2021 FXS PDF icon with arrow indicating PDF download.
Autism Spectrum Disorder in Fragile X Syndrome Dec 2020 FXS PDF icon with arrow indicating PDF download.
Behavioral Challenges in Fragile X Syndrome Dec 2018 FXS Open NFXF treatment recommendations for behavioral issues in Fragile X syndrome. Link to Spanish version PDF.
General Educational Recommendations for Fragile X Syndrome Oct 2018 FXS PDF icon with arrow indicating PDF download.
Early Childhood Developmental and Educational Recommendations for Children with Fragile X Syndrome Jan 2019 FXS Download the Early Childhood Education and Developmental Guidelines
Educational Recommendations for Fragile X Syndrome — Elementary School Aug 2019 FXS PDF icon with arrow indicating PDF download.
Educational Recommendations for Fragile X Syndrome — Middle and High School 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. Link to Spanish version PDF.
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) Mar 2018 FXTAS PDF icon with arrow indicating PDF download. Links to Spanish version PDF.
Genetic Counseling & Family Support Mar 2018 FXS PDF icon with arrow indicating PDF download.
Hyperarousal in Fragile X Syndrome Oct 2012 FXS PDF icon with arrow indicating PDF download.
Language in Fragile X Syndrome NEW July 2023 FXS PDF icon with arrow indicating PDF download.
Medications for Individuals with Fragile X Syndrome Dec 2021 FXS PDF icon with arrow indicating PDF download. Links to Spanish version PDF.
Mosaicism in Fragile X Syndrome Oct 2022 FXS PDF icon with arrow indicating PDF download.
Physical Problems in Fragile X Syndrome (PDF ONLY) Oct 2012 FXS PDF icon with arrow indicating PDF download.
Seizures in Fragile X Syndrome April 2022 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 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.

Missy Zolecki

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

Last Updated: 7/26/2021