CTNNB1 Connect & Cure Natural History Study with Columbia University

Welcome to our CTNNB1 Natural History Study Page in collaboration with Columbia University. This study involves clinical assessments by a specialist that will take place the two days prior to the research conference at Drew University to investigate multiple domains of CTNNB1 disorder, including motor function, cognition, nervous system issues, and the brain’s electrical activity. This data will advance the clinical understanding of CTNNB1 syndrome and help us prepare for clinical trials.

The registration period for these assessments ended on February 5th. If you signed up, please look for an email from geneticresearch@cumc.columbia.edu for your child’s evaluation schedule.

• All participants will be expected to arrive at least the evening prior to their scheduled research day/days so they are rested for assessments. The assessments will take place at Drew University where the welcome reception and conference are taking place.
• In order to participate, the patient must be enrolled in Simons Searchlight and up-to-date on their Simons participation
• For specific questions about the study you can reach out directly to Sean Calamia at Columbia University – sc5009@cumc.columbia.edu

Directions

Madison, NJ is located approximately 17 miles and 26 minutes by car from Newark International Airport. Laguardia and JFK airports are also within driving distance.

• From Interstate 287, take exit 35. At the end of the exit ramp, follow signs for Route 124 east (Madison Avenue). Travel three miles and turn right at the Lancaster Road traffic light onto the Drew University campus.
• From Northwest New Jersey via Interstate 80 east, take exit 43 (Interstate 287 south, Morristown). Proceed from Interstate 287.
• From Northern New Jersey and New York City (George Washington Bridge) via Interstate 80 west, take exit 43A (Interstate 287 south, Morristown), staying to the right in the local lanes. Proceed from Interstate 287.
• From Western New Jersey and Eastern Pennsylvania via Interstate 78 east, take exit 29 (Interstate 287 north). Proceed from Interstate 287.
• From Southern New Jersey via NJ Turnpike (Interstate 95 north), take exit 10. Follow signs for Interstate 287 north. Proceed from Interstate 287.
• From Eastern New Jersey and New York City (Lincoln and Holland Tunnels) via NJ Turnpike (Interstate 95 south), take exit 14. After the toll plaza, follow Interstate 78 west to exit 48 (Route 24 west, Springfield/Morristown), and then to exit 7A. Follow signs for Route 124 West/Chatham. Continue through Chatham and Madison (Main Street). Drive through downtown Madison and bear left under the railroad trestle to the second traffic light, at Lancaster Road. Turn left onto the Drew University campus.

Where to stay