Conquering Diseases

Fragile X Syndrome Registry


Seeking boys and girls with Fragile X Syndrome who were born between 2003 and 2017 for a registry to better understand how to manage and treat Fragile X Syndrome.


Participants in this registry will have a clinical exam with cognitive testing that may take as long as 3 hours shortly after joining the registry and then again about 2 years later. They will share their medical information and they and their parent or guardian will answer questionnaires.

What we're hoping for

We are enrolling people born between 2003-2017 who have Fragile X Syndrome (FXS) into a registry to collect data that we hope will improve managing and treating FXS and associated disorders.

Additional Information Identifier: Not Available

 Principal Investigator

Jean  Frazier, MD

UMass Memorial Health

 Study Contact

Lauren  Venuti


UMass Chan University Campus

55 Lake Ave North 

Worcester,MA 01655