The NEC Society is a collaboration among clinicians, researchers, families and others dedicated to reducing the incidence of necrotizing enterocolitis (NEC) in fragile infants. NEC affects over 4,000 premature infants every year in the U.S. and 1/3 of the infants who develop NEC will die from the disease. The financial impact of NEC is significant, with an estimated annual cost of up to $1 billion per year. Despite focused research on NEC for over four decades, we do not fully understand why NEC occurs, when NEC occurs, how NEC occurs, or which neonates will develop the disease. This lack of progress has been especially vexing, as the incidence of NEC has been increasing over the last several decades.

Infant who developed NEC

Although NEC is a leading cause of overall infant mortality in the United States, there has never been a U.S. conference solely dedicated to the prevention and treatment of NEC. This will change in spring of 2017, as the NEC Society has been approved for a Eugene Washington PCORI Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI) to support: Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes.

Jennifer Canvasser, MSW and Erin Umberger, along with the NEC Society’s scientific advisory council members, will lead the planning and implementation of this groundbreaking conference, in partnership with the University of California at Davis. Through this conference, the NEC Society will bring together the key stakeholders and leaders on NEC to develop new collaborations, new lines of research, and new protocols to help diagnose, prevent, and treat this devastating disease.

This conference will be particularly unique; it will be the first U.S. conference focused primarily on NEC, and it will be led by two mothers, Jennifer Canvasser and Erin Umberger, who each lost a child to this disease. “Jennifer and Erin have brought momentum and passion to what has been a stalemate in progress in preventing and understanding NEC. This conference is a tipping point in the neonatal community where those most affected by the disease (parents and their children) are joining with scientists and clinicians to drive meaningful change in practice and research, “ says NEC Society scientific advisory council member, Sheila Gephart, PhD, RN, from the University of Arizona College of Nursing.

The NEC conference is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI’s work.

“This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake,” said Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer. “We look forward to following the project’s progress and working with the NEC Society to share the results.”

The NEC Society’s project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. PCORI has awarded nearly $9.4 million to support 49 projects to date through this program. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.

If you would like to donate your time, skills or provide additional financial support for the NEC conference, please email Jennifer@necsociety.org and stay tuned for more details!

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.