The professionals who are part of the NFXF’s Fragile X Clinical & Research Consortium (FXCRC) and who are committed to the well-being of the Fragile X community, along with the parents on the FXCRC’s Executive Council, have been diligently updating the treatment guidelines and recommendations (informally referred to as the “consensus documents”) first drafted in 2011.
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 the same as “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 recommendations for the three primary Fragile X-associated disorders are written by professionals – for professionals, but with the understanding that they will be published online by the NFXF, will be read by parents and other family members (and in the case of some documents, by patients), and will be shared by those parents/families/patients with their own care professionals. As a result, the documents are not formal scientific papers. They are expert consensus 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 consensus documents will help to convey the key information quickly and more concisely than a formal literature review.
The NFXF will alert our readers as these 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.