As part of our concern to bring information to those affected by DDX3X, we keep fully informed about all studies in this field, along with any other research which could be useful.

Studies you could get involved in:

The American DDX3X Foundation (DDX3X registry) –

The American DDX3X study

Simon’s VIP Connect – Info and study (America) –

The Rudy Study – A study aiming to transform clinical care for rare diseases in the UK through patient driven research.

Imagine ID – This is a UK study asessing genomic impact on neurodevelopment. You will receive a personalised report of your child’s strengths and difficulties which you may find useful if your child has asessments for services, school or specialist treatments.

The BINGO Study – A study to find out how specific gene differences affect individuals with intellectual disability. The DDX3X gene mutation is one of the areas of focus and they would like to hear from families of people, aged 3 to 40.

Join our Facebook Group


Join the DDX3X Registry

Contribute to research into this rare condition.

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