Site © 2017-2019 by CTNNB1 Syndrome Awareness Worldwide (CSAW).  The information contained in this site should not be construed as a substitute for personal medical advice. Please consult with a qualified clinician in all matters relating to genetic diagnosis, management and health. 

 

Registry

June 14, 2017

Comprehensive CTNNB1 Syndrome Survey

​We are hoping to develop a survey that captures the detail of the diagnosis, symptoms, treatments and therapies related to CTNNB1 Syndrome. This is a currently a beta version of this survey, so responses to the survey will be deleted when we release the survey to the wider CTNNB1 group. We are looking for 10-15 people to take the survey and recommend improvements to the survey. Thanks for your help!  

June 14, 2017

Location Survey

We are hoping to get the location of everyone who has been diagnosed with CTNNB1 Syndrome. For the privacy of our children, we want to have just the country and city/state pinned on the map (we will place the pin at the city center). For your child's privacy, please use a codename that doesn't identify your child to anyone else but you! Currently, you may need be signed into a Google Account to access the map. Please note that this is a partially automated process that has to be manually initiated by the website admin, so please let me know to sync the map by emailing me at anthony.rose@ctnnb1.org (The fully automated process costs more money than we can afford right now!).  

You should be able to zoom and pan the map to see all of the pins.  Also, you might find that isn't optimized for some phones. However you may be able to click on the [ ] box in the upper right to open a full window.

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