We are keen to support research into Fragile X Syndrome and associated issues by encouraging the participation of our family members. 


We are always interested in hearing about new research projects. Any potential researchers should send the full protocol and evidence of ethical approval to our Research Officer, via info@fragilex.org.uk, where it will be reviewed by our Research Committee. 


Though we are willing to help researchers, below are some basic guidelines to which we would expect all potential researchers to adhere and respect. 

The Fragile X Society Supports Research!

Our Research Policy

  • The Fragile X Society maintains the absolute right to keep its membership details confidential.

  • Not all families are willing to take part in research, hence our database includes information about each member's willingness to participate or not - only those members who have indicated that they are willing to participate in research are approached.

  • All potential projects (protocol and ethics committee approval) must be submitted in writing to the Research Officer who will then pass them on to the members of the Fragile X Society’s Research Committee for vetting.

  • Researchers are expected to be responsible for their own postage and photocopying costs.

  • The Fragile X Society will supply a covering letter to be included in mailings to its members requesting their participation in research studies.

  • The Fragile X Society requires feedback on the results of research in the form of a report published in the Society’s newsletter regardless of whether the research is published elsewhere.

  • The Fragile X Society requires that its co-operation is acknowledged in published material.

  • Written agreement to the above guidelines is a pre-requisite to the Fragile X Society’s co-operation.


For more information please contact us