Nothing about us without us: advancing family-centered research and care in neonatal encephalopathy

What’s in a name? A diagnosis by any other name might have lifelong impacts on individuals and on families caring for newborns, children and adults who experienced neonatal encephalopathy (NE), and more specifically, hypoxic ischemic encephalopathy (HIE) after birth. For clinicians and researchers, diagnostic clarity is a priority. The common hope for both groups is an inclusive approach to access to the right care for all patients. While the interchangeable use of the terms NE and HIE is more inclusive, it does create challenges for patients and their families in the advocacy space, as well as researchers hoping to identify promising treatments that depend on specific pathophysiologic pathways. Investigators on the DEFINE study outlined the challenges in comparability of research results and inconsistent communication among professionals, and with families, when the terms NE and HIE are used interchangeably. 1 We eagerly anticipate the consensus findings of their Delphi study, which aims to define diagnostic criteria for NE.