1. Gephart, Sheila M. PhD, RN
  2. Eklund, Wakako M. DNP, APRN, NNP-BC

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A parent-led advocacy group with a mission to eradicate necrotizing enterocolitis (NEC) from neonatal intensive care units in the United States has received funding from the Patient Centered Outcomes Research Institute (PCORI) to hold the first US-based NEC symposium.1 The conference is being organized by the NEC Society and hosted by the University of California at Davis. It will take place in Davis, California, from April 5 to 7, 2017.2 The founder and executive director of the NEC Society, Mrs Jennifer Canvasser, has championed the prevention and early recognition of NEC through activation of parent and research communities since 2014 after the early death of her son from complications of the disease.3,4 Many other parents have joined the cause because of their children's experience with NEC. Unique to the organization is that they have engaged both parent advocates and researchers nationally and internationally to end NEC.


A unique quality of the conference is that it will be the first time on US soil that parent advocates, researchers, policy makers, and neonatal clinicians will come together to identify research priorities and action steps that can be taken to tackle the disease. NEC is one disease that has complex etiology and pathophysiology, resulting in very little changes in terms of advancement in both prevention and treatment in recent decades.1,4 NEC often strikes with little warning, and many parents including Jennifer and Noah Canvasser, NEC Society founders, are blindsided by the NEC diagnosis.4 Neonatal nurses' assessment skills often contribute to identifying symptoms of NEC at the bedside-making their attendance at the conference important.


Four strategic goals of the conference are listed in their conference brochure.5 Specifically, they are to:


1. Review the current understanding of the pathogenesis, prevention, and treatment of NEC;


2. Establish a transdisciplinary collaboration of stakeholders in NEC to accelerate the implementation and standardization of established evidence-based practices that can help reduce the incidence and morbidity of NEC;


3. Explore methods for empowering parents/families and supporting their engagement as part of their baby's care team; and


4. Serve as a venue for researchers to create new collaborations and lines of investigation, including shared clinical databases and tissue banking.5(p5)


Conference programming will address the array of issues in the science, practice, and family's experience around NEC.5 Keynote presentations will be delivered by David Hackam, MD, PhD, and Michael Caplan, PhD, MD-both known for their decades-long history of research in the field. Conference topics include strategies to increase awareness of NEC, boost research funding, enhance quality of life for survivors and parents, development of collaborative research (including a biorepository and cross-site clinical trials), the state of the science on NEC pathophysiology, detection methods, treatment options, and NEC-reducing quality improvement initiatives. A combination of concurrent sessions, poster presentations, and roundtable discussion will be used to engage participants. Continuing medical education credit is available, which is recognized by nursing continuing education groups. Registration is open and can be completed at




1. Canvasser J. NEC Society to host first U.S. NEC Conference, made possible by PCORI Engagement Award. Published July 16, 2015. Accessed January 14, 2017. [Context Link]


2. Sylvester K. NEC Society to host National NEC Symposium at UC Davis [YouTube video]. https:// Published October 3, 2016. Accessed January 24, 2017. [Context Link]


3. NEC Society. Who we are. Accessed January 24, 2017. [Context Link]


4. Vaughan S. Ep. 7: the NEC Society-perspectives from parents of infants impacted by NEC [podcast]. http:// Published September 27, 2015. Accessed January 24, 2017. [Context Link]


5. University of California Davis. Necrotizing Enterocolitis Symposium Conference brochure. http:// Accessed January 24, 2017. [Context Link]