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.