Necrotizing enterocolitis (NEC) is a multifactorial intestinal disease that causes 1 in 10 deaths in US NICUs. NEC affects medically fragile babies in their first weeks and months of life. Undoubtedly, NEC is a devastating disease and infants who survive often have lifelong neurological and nutritional complications. Yet, the prevention and treatment of NEC have largely been neglected for decades and the disease is too often regarded as inevitable. The NEC Society is working to change this.
Thanks to our Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), we have the opportunity to better understand the questions, concerns, and topics related to necrotizing enterocolitis that matter most to you.
We are bringing together an international, diverse group of NEC stakeholders who can help us prioritize the NEC research agenda. Our goal is to better understand and then address the questions that matter most to families, clinicians, and scientists. There is still so much for us to discover within the NEC community, and a prioritized research agenda, informed by diverse stakeholders, will help to ensure we direct our resources, time, and attention to the most urgent, impactful, viable, and meaningful research topics.
At the NEC Society, patient-families and clinician-researchers work hand-in-hand. We know the devastation of NEC, and we are committed to elevating and integrating the patient-family voice to ensure our work is relevant and valuable to those personally affected by the disease. Our team looks forward to your participation. Thank you for helping us build a prioritized research agenda, and thank you for believing in our vision of a world without NEC.
For questions regarding this project, please email Susan@NECsociety.org