Treatment and Intervention Recommendations for Fragile X
The NFXF’s family-friendly Treatment Recommendations are in-depth documents developed by NFXF staff, members of the NFXF’s Fragile X Clinical & Research Consortium (FXCRC), and other Fragile X professionals, and reviewed and edited by the entire FXCRC.
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.
About the Recommendations
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 Recommendations
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.