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Report from the 3rd (and final) Special Interest Group at INSAR

June 13, 2019

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Report from the 3rd (and final) Special Interest Group at INSAR

June 13, 2019

Thanks to everyone who joined us this May in Montreal, Canada, bright and early at 7AM!  This year we had a very special guest:  Roche Pharmaceuticals, who presented their data on how they are collaborating with patient advocacy groups to improve communication and study design using the direct input from patients.  

 

 

 

 

In addition, we presented a poster from data collected from each natural history registry and took the first step in harmonizing some of the key data elements.  The poster is below.

 

 

 

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