The participation of families like yours helps support our research.
Sign up now and get updates when you can take part in fragile X studies.
Signing up for our registry, or research list, is an easy way to help support our work.
Becoming an Our Fragile X World family lets us know that you will consider joining an upcoming study.
By taking a few moments now to sign up for our registry, you can
|Get invitations to take part in fragile X studies from our team of
independent, nonprofit researchers.
|Get updates about the results and impact of our studies through e-mail
updates, news, publications, and research reports.
|Have the satisfaction of knowing that you are helping us understand
fragile X better, find treatments, and help other families.
Sign up for our registry.
Fill out our enrollment
survey to sign up.
We contact you.
From time to time, we will invite you to take part in a study on fragile X.
The choice is yours.
You can decide if you would like
to take part in the study or not.
You can sign up for our registry if you or a family member has
fragile X, including the premutation or full mutation of fragile X syndrome (FXS).
You can sign up if
|You or your spouse has the fragile X premutation or FXS.|
|You are a family member (such as a grandparent) who has legal custody of a child
with the fragile X premutation or FXS.
|You are the parent of a child with the fragile X premutation or FXS
under 18 years of age (this includes biological, step, adoptive, and foster parents)
or the parent of an adult male with FXS 18 years or older.
|You are the legal guardian of an adult family member, including a sibling, child,
or other relative, with the fragile X premutation or FXS.
Our registry has contact information for people with fragile X and their families.
We keep information of only those people who have agreed to be on our list
by taking our enrollment survey. All of our studies are approved by an ethics board.
All of your responses will be private, confidential, and secure.
Have more questions about Our Fragile X World? Please contact us.
If you have already signed up for our registry, thank you for your support!
Without your time and help, we would not be able to do this important work.
Check out our current studies that are now open:
Need to update your contact information?
If you have a new address, phone number, or email, let us know
so we can stay in touch about upcoming studies.