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Research registry

The Fragile X Research Registry is a database of information about families affected with Fragile X and will be maintained by the Fragile X Research Foundation of Canada. The goal of the Registry is to help link families who are interested in learning about new research studies or clinical trials with researchers.

Who can enroll?

Anyone in Canada with an expansion of the FMR-1 (Fragile X) gene can enroll:
  • a person with a pre-mutation
  • a carrier
  • a person with a full mutation
  • a person who is a mosaic
Registrants will always receive detailed information about a new study and will be provided with the name and telephone number of the appropriate contact person so they can decide whether or not they would like to participate.

How to enroll

We invite you to enroll your child (or yourself, if applicable) by contacting
Dr. Carlo Paribello M.S.M., M.D. at (905) 453-9366 or by e-mailing him at medical@fragilexcanada.ca. Dr. Paribello will get in touch with you to answer any questions you may have about the Registry.

Privacy is important to us

The Fragile X Research Registry will adhere to strict guidelines to safeguard individual rights and privacy. All information, including names and addresses, submitted to the Registry, is considered confidential, and access is restricted to Registry personnel.

Information submitted to the Registry is NOT released to researchers, other departments or agencies. Instead, Registry personnel notify families about new research opportunities, and families may contact the researcher directly if they choose to participate.

Registry participants are under NO OBLIGATION to participate in any study.