Researchers from Emory University School of Medicine and Children’s Healthcare of Atlanta will collaborate on a project to expand research and treatment for patient-families with necrotizing enterocolitis (NEC) -- a rare but potentially lethal intestinal disease affecting premature and medically fragile infants. The project is sponsored by the NEC Society and is supported by a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). 

The PCORI award will elevate the NEC Society’s ability to drive patient-centered outcomes research (PCOR) and comparative-effectiveness research (CER) of importance to patients and families impacted by 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, 

This capacity-building project will be co-led by Jennifer Canvasser, MSW (founder, director of the NEC Society) and Ravi Patel, MD, MSc (Scientific Advisor for the NEC Society and associate professor of pediatrics at Emory University School of Medicine and Children’s Healthcare of Atlanta). The project will receive close support from the NEC Society's director, Erin Umberger, its board of directors and scientific advisory council, and the UC Davis Center for Healthcare Policy and Research. The UC Davis Center is an interdisciplinary research unit that leads community-based participatory research, PCOR, and CER, along with research education and policy translation.

The project’s core aims are:

• 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 long-term goal of this capacity-building project 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.

“PCORI has provided us with a unique opportunity to partner with patient-families, clinicians and researchers to develop and advance a shared NEC research agenda addressing questions relevant to all stakeholders,” says project co-lead Patel.

The NEC Society is a multidisciplinary, collaborative organization, established in 2014,  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. “

“We are profoundly honored and grateful for this incredible opportunity,” says NEC Society founder and director Jennifer Canvasser. “Since 2015, PCORI has served as a springboard for the NEC Society through its support for our organization. We are eager to continue to empower patient-families, collaborate with diverse stakeholders, and move mountains in the neonatal NEC community.”