In the latest from the NFXF Webinar Series, Drs. Georgina Peacock and Jennifer Kaminski from the Centers for Disease Control and Prevention join Dr. Elizabeth Berry-Kravis and NFXF team members Amie Milunovich and Robby Miller, to discuss the advances made in understanding Fragile X Syndrome through FORWARD↗, the Fragile X Online Registry With Accessible Research Database.

Drs. Peacock and Kaminski each express their gratitude for the partnership with the National Fragile X Foundation and to the families who have participated.

The good news is, there are currently 18 journal publications resulting from FORWARD data, with many more to come!

Dr. Berry-Kravis, FORWARD principal investigator, gives a brief description of key findings and recommendations from some of these publications, including their role in informing new treatments and therapies for individuals with Fragile X syndrome. She also discusses the virtual participation option for adults↗ with Fragile X syndrome.

Robby Miller discusses how FORWARD data benefits the development of resources to help families, including NFXF Treatment Recommendations↗.

How to Watch

Enter your name and email address below for your access to the on-demand recording of the webinar:

Recent Posts You May Be Interested In

  • test tube with blood

Understanding a Fragile X Intermediate Result

Oct 15, 2021|

Fragile X DNA analysis is one of the most commonly ordered medical genetic tests. It is recommended as a standard part of the genetic work-up of children with developmental delay, autism or intellectual disability. Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about Fragile X-associated Tremor Ataxia Syndrome (FXTAS) and Fragile X-associated Primary Ovarian Insufficiency (FXPOI). Fragile X carrier testing during pregnancy has also become relatively commonplace in the US and elsewhere, even for women without a family history suspicious for Fragile X disorders.