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New Research Study looking for Adult Participants with Full Trisomy 13

Dr Amy Lebedoff is looking for participants for her study Survey of Adults with Full Trisomy 13.  The Research is sponsored by Dr John Carey, a long-term Professional Adviser of SOFT UK and also SOFT USA. 

There are already 26 participant families signed up for the study, so this could be an important opportunity to contribute to first of its kind research in how Trisomy 13 affects adults.  

To read the Consent Forms click here.

To view a sample of the study questions click here.


For more details, please see the files below and contact the study directly.








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