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) – https://ddx3x.org/about-us/
The American DDX3X study – https://brain.ucsf.edu/mutations-ddx3x-0
This talk was given by Dr. Elliott Sherr (who is conducting the American DDX3X study) at the American DDX3X family day in 2017. He provides a background in genetics and an introduction to some of the impacts caused by a DDX3X gene mutation.
Simon’s VIP Connect – Info and study (America) – https://www.simonsvipconnect.org/information-resources/resources/downloadable-resources.html?id=643
The Rudy Study – A study aiming to transform clinical care for rare diseases in the UK through patient driven research. www.rudystudy.org
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. www.imagine-id.org
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. http://www.mrc-cbu.cam.ac.uk/bingo/
Join our Facebook Group
Join the DDX3X Registry
Contribute to research into this rare condition.
Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites.