Now Enrolling!
Institution: Children’s Hospital, Colorado (CHCO)
Principal Investigators: Megan Abbott, MD
Funding: SRF Grant 2024.3
Inclusion Criteria: SYNGAP1 Diagnosis
How to Sign Up for the SYNGAP1 Clinic at Children’s Hospital Colorado
To schedule an appointment:
📞 Call or email the clinic’s nurse coordinator, Ryleigh VandenBroeke, at 720-777-3365 or SYNGAPClinic@childrenscolorado.org.
After your appointment date is confirmed:
📧 Please email ProMMiS@cureSYNGAP1.org so we can track enrollment in the natural history study.
Note: If you have not received appointment confirmation within 5 business days, please follow up with Ryleigh or call Rose at 720-777-9720.
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!
Need financial assistance to get there? – ProMMiS Travel Assistance Program
đź“– Read about the Bower family’s experience when visiting the CHCO Clinic: cureSYNGAP1.org/CamCHCO.
đź“– Read Beata Tarasiuk’s tips: What to Expect When Visiting the SYNGAP1 Natural History Study at Children’s Hospital, Colorado (CHCO)