The NEC Society Research Collaborative propels NEC research that matters to patient-families. The Research Collaborative convenes multidisciplinary investigators who are committed to conducting NEC research as one collective team. Click here to learn more about the Research Collaborative.

Active Projects:

• Long-term Outcomes of NEC

The NEC Society has received an 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.

• NEC Biorepository

The effort to build the NEC biorepository began at the NEC Symposium. Participating centers from the Research Collaborative collect and share biological samples from infants affected by NEC, as well as infants who did not experience NEC. The goal is to develop biomarkers to predict a baby’s risk of contracting the disease and offer preventive strategies against it.

• National Benchmarking Tool for NICUs

The goal of this benchmarking database is to collect center-specific data and patient-specific data as a way to analyze the variation of care and compliance to protocols. The Research Collaborative hopes to use this information to develop recommended standards of care. The framework for this project has been developed and the Collaborative will soon start to collect data. 

• Comparative Effectiveness Research with Families in the NICU

Currently, most research within NICUs requires parents to “opt-in” to participate. This project explores an “opt-out” research model, where de-identified data would be available for researchers to use unless parents opt-out. We want to understand the ethical and practical implications of this model where families passively agree to participate in research. The vision is to create a model where critical research needs can be addressed efficiently and with compassion for the trauma that families in the NICU experience.

NEC Society Research Collaborative Members

• Steven Abrams, MD, University of Texas at Austin
• Pierro Augustino, MD, University of Toronto 
• Gail E. Besner, MD, Nationwide Children’s Hospital
• Martin Blakely, MD, MS, Vanderbilt University
• Jennifer Canvasser, MSW, NEC Society 
• Michael Caplan, MD, Northshore University Health System
• Hala Chaaban, MD, University of Oklahoma
• Elizabeth Cristofalo, MD, MPH, Johns Hopkins Hospital
• Cynthia Downard, MD, MMSc, FACS, University of Louisville
• Henri Ford, MD, University of Southern California 
• Samir K. Gadepalli, MD, MBA, University of Michigan
• Parvesh Garg, University of Mississippi Medical Center
• Christopher Gayer, MD, PhD, Children’s Hospital Los Angeles
• Sheila M. Gephart, PhD, RN, University of Arizona
• Ashleigh Grant, NEC Alliance, Australia
• Katherine Gregory, PhD, Brigham and Women’s Hospital
• Misty Good, MD, MS, Washington University School of Medicine
• David J. Hackam,MD, PhD, FACS, Johns Hopkins Hospital
• Amy Hair, MD, Baylor College of Medicine, Texas Children’s Hospital
• Catherine J. Hunter, MD, Children’s Hospital of Chicago  
• Minesh Khashu, M.D., NHS
• Ulf Kessler, Service de Chirurgie, HFR Fribourg
• Jae Kim, MD, PhD, University of California, San Diego
• Sunyoung Kim, PhD, LSU School of Medicine & Health Sciences Center
• Liza Konnikova, MD, PhD, Harvard Medical School
• Troy A. Markel, MD, FACS, FAAP, Indiana University
• Camilia R. Martin, MD, MS, Beth Israel Deaconess Medical Center-Harvard Medical School
• Colin Martin, MD, University of Alabama at Birmingham
• Steven J. McElroy, MD, University of Iowa
• R. Lawrence Moss, MD, Nationwide Children’s Hospital
• Josef Neu, MD, University of Florida Professor of Pediatrics
• Oluyinka Olutoye, MD, PhD, Baylor College of Medicine 
• Mohan Pammi, M.D., Ph.D., Baylor College of Medicine
• Aloka L. Patel, M.D., Rush University Children’s Hospital
• Ravi Mangal Patel, M.D., Emory University School of Medicine and Children’s Healthcare of Atlanta
• Alexander Penn, PhD, US Army Institute of Surgical Research
• Jorge E. Perez, M.D., South Miami Hospital
• Muralidhar H. Premkumar, MD, MRCPCH, MS, Baylor College of Medicine
• Venkatesh Sampath, M.D. Childrens Mercy Hospital Kansas City MO
• Brian Scottoline, Oregon Health & Science University
• Karl Sylvester, MD, Stanford
• Maria M. Talavera, DO, Nationwide Children’s Hospital
• Erin Umberger, M.Arch, NEC Society  
• Mark Underwood, MD, University of California, Davis
• Brad W. Warner, MD, Washington University 
• Joern-Hendrik Weitkamp, Vanderbilt University
• Scott Welak, M.D., Medical College of Wisconsin
• Toby Debra Yanowitz, MD, MS, University of Pittsburgh School of Medicine