Research That Matters to Patients

By Linseigh Green, NEC Society Outreach Manager

After graduating from NYU, the NEC Society invited me to share my story of growing up as a NEC survivor. At the 2019 NEC Symposium, I told the ballroom full of clinicians about my many complications from NEC, including an inability to keep food down and how I have yet to find a physician who specializes in supporting young adults with long-term outcomes of necrotizing enterocolitis.

For many Symposium attendees, it was their first time ever hearing from an adult who survived NEC as an infant. Since most published NEC research has focused on children under the age of two, very little is known about the long-term effects of NEC. After the Symposium, the NEC Society recognized this gap and swiftly launched a research project to elevate the voices of patient-families affected by NEC. 

We collaboratively developed survey questions, recruited patient-families, and read over every single response. It felt empowering to take initiative and help contribute toward a project that could transform my life. Our research project embodied equity and authentic engagement between researchers and patient-families. 

Our work demonstrates what life looks like after a NEC diagnosis for many families. The publication is available here, and you’ll see that NEC continues to affect patients and their families years after leaving the NICU. In the survey, one patient-family shared:

The long-term effects of NEC control my son’s life. The hospital is his second home, his development is severely impacted, he has daily GI pain, he can’t eat by mouth, and he is 100% TPN dependent. And so much more.” 

While our work has shed light on the life-altering impacts of NEC, we still have a long way to go to improve outcomes for patient-families. 

Patient-centered research is critical to advancing the needs of our patient-family community. There are things we cannot learn in a lab, where we are fragmented from the ways the disease shapes, and too often shatters, the dreams of children, parents, and loved ones. 

Patient leadership is changing how we care for and engage with families in and out of the NICU. The NEC Society’s research project on the long-term outcomes of NEC has been praised by clinician-researchers as well as patient-families, who, for the first time, feel validated and hopeful about a brighter future. 

Patient-families are our why. At the NEC Society, we are committed to being responsive to our community and look forward to continually improving outcomes for families affected by necrotizing enterocolitis – be it through research, education, or advance, we are here every day working to bring us closer to a world without NEC. 

You can join us here.

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