We are a group of researchers at Emory University in Atlanta, GA who want to understand more about 3q29 Deletion Syndrome. We hope this registry will serve to unite a community of 3q29 Deletion individuals and their families. We also want to learn in finer detail about the medical and behavioral manifestations of 3q29 deletion. With this information we will educate clinical providers, so that they can communicate better with newly diagnosed patients. We also expect to raise visibility and awareness about 3q29 Deletion Syndrome, so that even more research can be done. We are very excited about this endeavor, but we can't make it happen without your help. We hope that people affected by 3q29 Deletion Syndrome will join the registry.
Collecting information from patients is very important, but protecting the privacy of people affected by the syndrome is also extremely important. In order to protect your privacy, Patient Crossroads (the company that designed the registry software) has designed many safeguards. Your child’s information will be “de-identified” so no one who looks at the data can identify you or your child. No one will be able to receive any identifying information about your child unless you give explicit consent for your child’s identity to be released to that researcher.