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About The Fragile X Research Registry

How does the Registry work?

Registry members are matched to studies using the information you provide us on the enrollment form. We will send you a notice about the study if you meet the participation criteria. Your name is not released to researchers unless you give us permission.

Will you be obligated to be in studies?

Research participation is always voluntary. Joining the Registry allows us to inform you about studies; you decide whether or not you will participate in a study.

Your decision to join the Registry will not affect any services that you or your family receives from clinics or programs at the participating research centers.

What about your privacy?

Privacy is critical, so the Registry adheres to strict federal, state, and university guidelines to safeguard individual rights and privacy. Institutional Review Boards at UW and UNC review all registry procedures annually to make sure we meet requirements that protect the rights of people involved in research. Information in the Registry is confidential and is only used to determine study eligibility. All information is stored in a secure location with physical, electronic and procedural safeguards. No information is disclosed to outside parties except when you sign an informed consent form for a research project. For more information regarding our policies and procedures about privacy, please see the Privacy page.

Who is eligible to sign-up?

  • A biological or an adoptive parent who is legally authorized to provide consent may enroll children under the age of 18 who have a fragile X diagnosis.
  • Adults who have a fragile X diagnosis or one of the related fragile X-related disorders (FXPOI, FXTAS, or premutation carrier), and who are able to provide consent may enroll on their own behalf.
  • A parent or legal guardian may register an adult who is not able to enter in his/her own information.

How do you sign up?

View the "Join" section of this website. Read our consent and authorization statement and agree to the terms on-line. Complete the short questionnaire.

You may also contact the Fragile X Research Registry office to sign up over the phone.

How can you benefit from being in the Registry?

The Registry keeps you informed about new research and the variety of studies being conducted across the country. The Registry provides a summary of findings for each participant at the end of the study.

Yearly Update Form

Once a year we will ask you to complete a form which will allow us to update information about you and to insure that we have the correct contact information, such as your address and phone number.

Ready to get started?