PAPS PapersStandardized reporting for congenital diaphragmatic hernia – An international consensus☆
Section snippets
Methods
The congenital diaphragmatic hernia study group (CDHSG) was founded in 1995 to prospectively collect data on infants with CDH [17]. This is a voluntary registry collecting data on all live born infants with CDH from a participating institution. Data are collected until death or discharge/transfer from the hospital. The data collected include demographic information as well as treatment information and outcomes. Periodic evaluations of data collection forms have resulted in successive revisions
Results
A total of 2,296 patients were entered into the registry during the time period of this study. These patients were cared for in 53 participating centers. Patients treated at 2 centers were excluded as greater than 40% of their patients did not have a coded defect, leaving 51 participating centers from 9 countries. Additionally excluded were 41 who had either bilateral or Morgagni type defects, and 2 patients who were transferred from the participating center before repair. Overall survival for
Discussion
Congenital diaphragmatic hernia remains a challenging problem. Mortality remains high and while survival has improved in the past decade, morbidity in the survivors is substantial [19], [20], [21], [22]. Because the anomaly occurs infrequently, very few centers treat large numbers of patients. In the past 20 years, there has been a rapid expansion in the number of therapies available for these infants. These include fetal intervention, ECMO, iNO, surfactant, HFOV and numerous pulmonary
Conclusion
In conclusion, patients with CDH can be effectively stratified into stages based on readily available clinical information. Given the wide variation in therapies for CDH and the broad range of patients seen in different institutions, we believe it is important that all clinical reports of patients with CDH be reported by stage and include the patients who do not receive surgical therapy. It is clear that using current therapy, mortality is low for infants with stage I and II lesions. Our group
References (30)
- et al.
A five-year statewide experience with congenital diaphragmatic hernia
Am J Obstet Gynecol
(1991) - et al.
Congenital diaphragmatic hernia: epidemiology and outcome
Clin Perinatol
(1996) - et al.
Analysis of an improved survival rate for congenital diaphragmatic hernia
J Pediatr Surg
(2003) - et al.
Congenital diaphragmatic hernia in 120 infants treated consecutively with permissive hypercapnia/spontaneous respiration/elective repair
J Pediatr Surg
(2002) - et al.
Early repair of congenital diaphragmatic hernia on extracorporeal membrane oxygenation
J Pediatr Surg
(2010) - et al.
Costs of congenital diaphragmatic hernia repair in the United States – extracorporeal membrane oxygenation foots the bill
J Pediatr Surg
(2011) - et al.
Mortality prediction in congenital diaphragmatic hernia
J Pediatr Surg
(2008) - et al.
Long term follow-up in high-risk congenital diaphragmatic hernia survivors: patching the diaphragm affects the outcome
J Pediatr Surg
(2011) Cardiac anomalies in patients with congenital diaphragmatic hernia and their prognosis: a report from the Congenital Diaphragmatic Hernia Study Group
J Pediatr Surg
(2005)- et al.
Congenital diaphragmatic hernia in the preterm infant
Surgery
(2010)
The Congenital Diaphragmatic Hernia Study Group: a voluntary international registry
Semin Pediatr Surg
Neurodevelopmental outcome of infants with congenital diaphragmatic hernia prospectively enrolled in an interdisciplinary follow-up program
J Pediatr Surg
Neurodevelopmental outcomes of congenital diaphragmatic hernia survivors followed in a multidisciplinary clinic at ages 1 and 3
J Pediatr Surg
The independent effects of hyperventilation, tolazoline, and dopamine on infants with persistent pulmonary hypertension
J Pediatr
Late gestation fetal magnetic resonance imaging-derived total lung volume predicts postnatal survival and need for extracorporeal membrane oxygenation support in isolated congenital diaphragmatic hernia
J Pediatr Surg
Cited by (228)
Exploring new perspectives on congenital diaphragmatic hernia: A comprehensive review
2024, Biochimica et Biophysica Acta - Molecular Basis of DiseaseSurfactant Therapy in Congenital Diaphragmatic Hernia and Fetoscopic Endoscopic Tracheal Occlusion
2024, Journal of Surgical ResearchDecreased β-catenin Protein in Lungs From Human Congenital Diaphragmatic Hernia Archival Pathology Specimens: A Case-control Study
2024, Journal of Pediatric SurgeryTwo cases of right congenital diaphragmatic hernia with stable respiratory condition: Two case reports
2024, International Journal of Surgery Case ReportsTranspyloric Tube Placement Shortens Time to Full Feeding in Left Congenital Diaphragmatic Hernia
2023, Journal of Pediatric Surgery
- ☆
All assume responsibility for the content and integrity of this article.
- 1
The Members of the Writing Group.