It’s finally here! Today the International Fragile X Premutation Registry launched in the U.S! The registry will launch internationally in 2021.
We have shared who, what, when, where and, most importantly, why this registry is being created. We have introduced you to the group of international fragile X experts and professionals who make up the International Fragile X Premutation Registry Advisory Committee. Dr. Hessl highlighted the focus of the registry, to build a community of diverse individuals to better understand the relationship between the fragile X premutation and health, all while creating a powerful springboard for future research.
Now you can explore the International Fragile X Premutation Registry page on the NFXF website. You will find information about the Registry, a Frequently Asked Question section, the pictures and biographies of the Advisory Committee, and the “Enroll Now” button. The “Enroll Now” button will take you to the HIPPA-compliant REDCap database where your information will be stored. This video will walk you through what joining the registry looks like. Spoiler alert, it takes no more than 20 minutes!
As always, please reach out to us with any questions or comments you have. On behalf of the entire International Fragile X Premutation Registry team, thank you for your interest and excitement around this registry. We have received emails from all around the world expressing enthusiasm for this initiative. This is an incredible step for premutation research, and we could not do this without your help. Thank you for all you do.