It’s almost here! The International Fragile X Premutation Registry launches in the U.S. in just two weeks. 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. This week we want to give you a sneak peek at what the online registry looks like and highlight the focus of the registry
Dr. David Hessl of the University of California, Davis MIND Institute introduces the International Fragile X Premutation Registry in this short video. Dr. Hessl explains that we still have a lot to learn about the fragile X premutation, and this registry can help us. He summarizes the three things that the registry focuses on:
- The registry will build community among researchers, clinicians, and fragile x carriers and their family members worldwide.
- The registry will develop a very large and diverse group of individuals interested in contributing to research … and a more clear understanding of connections between the premutation and human health.
- The registry will build a group of potential participants for treatment studies … including clinical trials, especially one focused on FXTAS and people at risk for FXTAS.
We will continue to share weekly updates as we get closer to our U.S. launch. Stay tuned to learn more about how the Registry works!
We look forward to keeping you updated and hope you will consider joining the registry when the time comes! In the meantime, send me an email if you have any questions.