Enter
Registry
The FX Research Registry is for individuals who want to be notified
when research studies on FXS need participants. Individuals (adults
or children) diagnosed with fragile X who live anywhere in the
United States are eligible to participate.
The Registry refers individuals to relevant studies while protecting
their privacy.
Anyone with an expansion of the fmr-1 (fragile X) gene: either
a premutation/carrier or a full mutation (including mosaicism) may
register.
Press this button to continue on to the first page of the enrollment
questionnaire:
|
 |
Give
Consent
If you have just completed the online questionnaire, thank
you for entering the registry!
The final step in the registration process is Giving Consent.
This will allow us to keep your information in the registry. We cannot
match participants with research opportunities without participant
consent.
You may download the forms from the Consent
Forms page, sign them and return them to us. If we
do not receive signed consent forms, we will send them to you.
If you have any questions, do not hesitate to call us. We are available
by email, phone (including toll-free), and US Mail. See Contact
Info page for
more information.
|
