By Hilary Rosselot
It’s official, the International Fragile X Premutation Registry is now international!
When we first launched the registry in November 2020, we weren’t yet able to accept non-U.S. registrants. There’s a lot of regulations and standards to work through on a project like this, but now we are truly living up to our name!
In collaboration with the UC Davis MIND Institute, we’ll be expanding our efforts to reach premutation carriers living outside of the U.S., including the addition of several language translations of the registry. These will roll out one at a time throughout 2021, with the first one — in Spanish — launching shortly. All language versions will be available through our International Fragile X Premutation Registry page.
The Premutation Registry’s purpose is to build a large, diverse group of Fragile X carriers and their family members worldwide, who are interested in contributing to future research and to build community and resources for families affected by the premutation.
It is important for researchers to have participants who are premutation carriers only and who also have a premutation disorder, such as FXTAS. If you or a loved one are currently living with FXTAS — or any other Fragile X premutation condition — you can help by enrolling in the Premutation Registry. Keep in mind that even those with advanced FXTAS can be enrolled by a named legally authorized representative.
We want to enroll as many qualified people as possible to help inform future research on FXTAS and the premutation in general, ultimately leading to better care and possible treatments. This doesn’t commit you to participate in any specific research.
The International Fragile X Premutation Registry consent and content has been reviewed for GDPR (General Data Protection Regulation) compliance by professionals in the Compliance Office and the Office of the President at the University of California. The Premutation Registry leadership team — an international advisory committee of dedicated Fragile X professionals from some of the world’s most respected institutions — has also made every effort reach and maintain GDPR compliance. As always, it is your choice to join the Premutation Registry.
Also see from UC David Health: Fragile X premutation registry launches internationally