You are invited to join a registry setup by the National Fragile-x Foundation (U.S. based) in conjunction with Fragile-X organizations around the world.
It includes a large and diverse group of individuals with the Fragile X premutation (as well as family members without the premutation) will greatly facilitate research, including future treatment and intervention studies. Note that research is not restricted to medications and includes any interventions that could positively impact your quality of life.
A registry is not considered research. A registry is a contact list that can be used to help support research. But you are asked to provide consent to participate in the registry.
It is important for researchers to have participants in the Registry who are both premutation carriers and those who have the premutation conditions, such as FXTAS or FXPOI. This will help inform future research on FXTAS, FXPOI, and the premutation in general, leading to better care and possible treatments.
Please go to fragilex.org/ifxpr for more details.