NEC: Long-Term Outcomes

What are the long-term outcomes of NEC? How does NEC affect children, families, and adult NEC survivors years after their original NEC diagnosis?

Our research project explored these questions. We are grateful to our patient-family community, who helped to build and launch this research project, and who took the time to share their family’s personal experience with NEC.

The recording and slides from the NEC Society’s webinar on the Long Term Outcomes of NEC are available. The recording of Jennifer Canvasser’s presentation of this research project is available here.

This research study was led by Jennifer Canvasser from the NEC Society and James Harrison from the University of California San Francisco. If you have questions regarding this survey, please email Thank you!

Watch our 1-minute video about the long-term outcomes survey:

Study excerpts:

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