Sign Up for Our Registry

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.

 

 

WHY SIGN UP?

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.



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HOW IT WORKS

1

Sign up for our registry.
Fill out our enrollment survey to sign up.

  • Takes about 20 minutes
  • Asks questions about you, your
    family, and your fragile X status
2

We contact you.
From time to time, we will invite you to take part in a study on fragile X.

  • No more than 1-2 studies per year
  • Most studies are phone- or web-based
1

The choice is yours.
You can decide if you would like to take part in the study or not.

You can also let us know at any time if
you'd like us to stop contacting you.



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WHO CAN SIGN UP?

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.



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OUR PLEDGE TO YOU

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.


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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.


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