We invite and encourage families with Trisomy 13 and Trisomy 18 to join us in further understanding the nature and treatment of the conditions.
If your child is being seen or was seen by a doctor at one of the medical centers who are research partners for the Trisomy 13/18 Registry, a member of the research team at that center can help enroll your child. The contact information for each medical center can be found here.
If you would like to directly register your child, learn more on how to grant permission for your child to be enrolled and to complete the parent survey. A member of the research team at Boston Children’s Hospital is also happy to assist you; please email us at trisomy1318research@cardio.chboston.org.
External users can log onto REDCap and enter data.