The CDH Focus Group has been active since 2013 and is currently comprised of 35 members representing 22 CHNC centers. The group includes neonatologists, pediatric surgeons, advanced practice providers, data coordinators, and neonatal-perinatal fellows. The CDH Focus Group members have a clinical and research interest in understanding the pathophysiology and management of infants referred to Level IV NICUs with CDH. The group has focused its research efforts on understanding the medical and surgical management that influences short- and long-term clinical outcomes for these complex infants.
Mission & Goals
The mission of the CHNC CDH Focus Group is to work collaboratively to leverage our collective experience and expertise to improve the care and clinical outcomes of infants with CDH. We aim to analyze data collected by CHNC centers to better understand this complex condition, perform clinical outcomes research studies, and provide education related to CDH to families and medical providers.
- The CHNC CDH Focus Groups is recognized as a leading forum for expertise related to the care and management of infants with CDH in the US and Canada.
- The CDH Focus Group develop and risk-adjustment model in 2015 that allows for comparative survival outcomes reporting, adjusted by severity of illness.
- Publication of educational materials distributed to all CHNC members (2021), to be utilized for local team and trainee education.
- Publication of a family educational book for parents of infants diagnosed with CDH. Publication of books supported by a grant from the Fore Hadley CDH Foundation.
- Faculty members of the CDH Focus Group have been invited to speak and moderate scientific sessions, publish review articles (Seminars in Perinatology) and contribute to national clinical guidelines in other national forums (ELSO).
- The work of the CDH Focus Group has been presented at several national scientific conferences (Pediatric Academic Society, Keystone ECMO Conference, ELSO Conference)
- The CDH Focus Group has collaborated with other CHNC focus groups (Cardiology, ECMO, PACE)
Fore Hadley CDH Foundation research grant (2018): “Sedation & Analgesic Medication Usage in Infants with Diaphragmatic Hernia”. PIs: Karna Murthy, Theresa Grover.