If you choose to enroll in the registry, you’ll be asked to enter information about yourself into a database, which is housed on a secure, HIPAA-compliant data system hosted by UC Davis (for more information, see the FAQs below under Security).
The information you’ll need to enter includes your name and contact information, the name and contact information of someone else who may be able to help the team locate you (e.g., if you move and we cannot find you), demographic information such as your race and ethnicity, details of your fragile X DNA test results (if available), and your interest in sharing biological samples (e.g., blood, saliva) in future research. You’ll also have the opportunity to provide details about any symptoms you may be experiencing.
The registry also asks for information such as your birth date, birth name, and where you were born. While it’s not required that you provide these details, if you do, the information will be used to create what is known as a GUID — Global Unique Identifier — for you.
A GUID is a universal participant ID allowing researchers to share data specific to a study participant and match participants across labs and research data repositories — without exposing personally identifiable information.
We want to emphasize that all personally identifying information (e.g., name, date of birth, address, email) is stored separately from the other data and is only accessible to the registry director and coordinator. It is not shared.