About the Dup15q Alliance International Registry

The Dup15q Alliance International Registry was developed to gain a better understanding of  Dup15q Syndrome.  The registry will allow us to collect data and look for similarities, differences and areas that need to be further studied.  A better understanding of the characteristics of this syndrome is one of the main goals.

The second goal is to provide a rich database to accelerate research.  Each family will be assigned a code number and all information is de-identified.  If a researcher is interested in a certain sub group, they will contact the coordinator, who will inform the family of the research project.  The researchers will not have access to any identifying or contact information for families. 

This registry will be a catalyst for defining the phenotype (characteristics) of Dup15q, promoting research into Dup15q and defining areas that need to be further researched. 

The Dup15q Alliance International Registry was made possible by the generous donations of friends and family from Dup15q Alliance.