The NEC Society has received a $250,000 Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) to support the organization’s two-year research capacity building project. This PCORI award will advance the NEC Society’s ability to drive patient-centered outcomes research (PCOR) and comparative-effectiveness research (CER) that matters to patient-families impacted by necrotizing enterocolitis (NEC), while also serving as a model for other neonatal rare disease communities. The NEC Society’s project is titled Building Capacity for PCOR/CER in the Neonatal NEC Community.

“PCORI is pleased to fund patient-led organizations to build their capacity to drive patient-centered research. With Engagement Award funding, the NEC Society will further develop the infrastructure and leadership of the NEC Society Research Collaborative comprised of families, clinicians, and scientists working together to prevent and treat necrotizing enterocolitis and its devastating burden upon premature and medically fragile neonates,” noted Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer.

The NEC Society received its first $50,000 award from PCORI in 2017 for the NEC Symposium at UC Davis, and its second $50,000 award from PCORI in 2019 for the NEC Symposium at the University of Michigan. Founder and Director of the NEC Society, Jennifer Canvasser, shares, “This project will allow us to take our work to the next level and we are profoundly grateful to PCORI for this opportunity. We are eager to empower patient-families, collaborate with diverse stakeholders, and drive research. To succeed, we are counting on continued support from our community. Every donated dollar matters as we lead this global movement to build a world without NEC.”

The NEC Society’s two-year capacity building project will be co-led by Jennifer Canvasser, MSW and Ravi Patel, MD, MSc (Scientific Advisor for the NEC Society and Associate Professor of Pediatrics at Emory University and Children’s Healthcare of Atlanta), with close support from the NEC Society’s co-director, Erin Umberger, Board of Directors, Scientific Advisory Council, and UC Davis Center for Healthcare Policy and Research (CHPR).

The UC Davis CHPR was established in 1994 and is an interdisciplinary research unit that leads community-based participatory research, PCOR, and CER, along with research education and policy translation. The UC Davis CHPR team will support the NEC Society in achieving the project’s core aims:

• To create and train a dedicated NEC PCOR Leadership Team, consisting of patient-families affected by NEC and clinician-researchers focused on NEC.

• To develop methods and strategies to determine and drive priorities for PCOR research in the NEC community.

• To establish a model framework for patient-centered research in the neonatal rare disease community, which can be disseminated to and used by other diverse groups and stakeholders.

The project’s long-term goal is to expand the skills and capacity of the NEC Society Research Collaborative to fully utilize the patient-family voice in the development, implementation, analysis, and dissemination of future research projects. The NEC Society Research Collaborative strives to improve the prevention and treatment of NEC by bringing together multidisciplinary investigators to conduct novel research as one collective team.

The NEC Society is a multidisciplinary, collaborative organization that prioritizes diversity and strives to elevate the voices of women, racial and ethnic minorities, as well as junior clinicians and scientists. Patient-family empowerment is core to the NEC Society’s mission, and patient-family advocates from around the world participate in the NEC Society’s projects. The NEC Society strives to epitomize PCORI’s vision of using authentic engagement to drive patient-centered research and improved care practices.

Stay tuned for updates and progress on this capacity building project!

Necrotizing enterocolitis is a devastating intestinal disease that primarily affects premature and medically fragile infants. The NEC Society was established in 2014 and is a 501c3 nonprofit organization dedicated to building a world without NEC.

PCORI is a 501(c)1 nongovernmental, nonprofit organization established by the 2010 Patient Protection and Affordable Care Act. PCORI is dedicated to advancing patient-centered outcomes research that engages patients and other stakeholders throughout the research process and seeks answers about what works best for patients.