SYNGAP1 Natural History Study at The Center for Epilepsy and Neurodevelopmental Disorders (ENDD) at CHOP

Now Enrolling!

Institution: Children’s Hospital of Philadelphia (CHOP)

Principal Investigators: Benjamin Prosser, PhD, Beverly Davidson, PhD, and Ingo Helbig, MD

Inclusion Criteria: A diagnosis of SYNGAP1 *All ages

How to sign up: Send your child’s name, age, location to endd@chop.edu with the subject “Syngap1 NHS.” Please cc ProMMiS@cureSYNGAP1.org.

Once you have visited a ProMMiS site, please complete a short set of caregiver surveys through RARE-X to add valuable information that researchers cannot capture during clinic visits. See cureSYNGAP1.org/RAREX for more details!

Helpful links to learn more about ENDD/CHOP and participation in the Study can be found here!
Need financial assistance to get there? – ProMMiS Travel Assistance Program
ĀæNecesita ayuda financiera? – Programa de Asistencia de Viaje ENDD en Espanol
Flying with your Syngapian is difficult – consider Angel Flight as an option to a flying commercial.

CHOP Presentation at the CURE SYNGAP1 Conference in 2024
What Is the Biggest Hurdle with Signing up For Natural History Studies?