The FBXO31 patient study will collect and analyze FBXO31 patient health data. It is designed to help increase understanding and known treatment options for FBXO31-related neurodevelopmental disorders. The survey is sponsored by the FBXO31 Foundation and is designed to be taken by individuals who have a loved one impacted by a FBXO31 gene mutation.

The information that you provide in the FBXO31 International Patient Survey will be kept in a secure database. The security protections for this database have been carefully reviewed. No identifying information will be shared without your approval.

Some family members have requested an option to add additional details about their answers. Due to the open data platform that immediately de-identifies all information there is not an option to add specific details at this time. Protecting our patient’s privacy is of the utmost importance to us.  We hope to support a natural history study, clinic, or additional research opportunity in the future that would allow patients the opportunity to provide more specific details to their survey responses.

If you have any questions please contact the Mary Beth Kiser by e-mail at mbkiser@fbxo31foundation.org.

OR if you questions about the FBXO31 survey please contact us.