Fragile X Treatment Recommendations and Guidelines (original) (raw)

Treatment and Intervention Recommendations for Fragile X

Treatment and Intervention Recommendations for Fragile XDan Whiting2024-09-26T16:53:12-04:00

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 conditions —FXS, FXTAS, and FXPOI— are written by professionals, with input from parents and other caregivers. The target audience is families, caregivers and those with the condition. The documents can also be used to inform professionals who are not overly familiar with Fragile X.

The NFXF’s Treatment Recommendations are not formal scientific papers and are not considered formal “Guidelines;” they are summaries that communicate existing knowledge and intervention strategies in a more family-friendly way than papers written by and for professionals. The content is generally based on expert opinion and consensus by those who have extended experience in the Fragile X field. Wherever possible, the content also includes data and scientific evidence-based recommendations. Parents, family members and other caregivers are encouraged to read and share the documents. Scientific papers are referenced in the documents for those who wish to further explore the literature.

Recommendation Documents

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