Subscribe to RSS
Please copy the URL and add it into your RSS Feed Reader.
https://www.thieme-connect.de/rss/thieme/en/10.1055-s-00000015.xml
Eur J Pediatr Surg 2015; 25(06): 488-496
DOI: 10.1055/s-0035-1569151
DOI: 10.1055/s-0035-1569151
Review Article
The Congenital Diaphragmatic Hernia Study Group Registry
Further Information
Publication History
16 October 2015
19 October 2015
Publication Date:
07 December 2015 (online)
Abstract
Congenital diaphragmatic hernia (CDH) is a rare anomaly with an incidence between 1/2,500 and 1/3,000 live births. The rarity of the disease makes it difficult to design powerful studies leading to accurate and meaningful evidence. For rare diseases, the development of multicenter international registries may help in collecting data and give an overall picture of the disease. In this review, we will describe the development of the CDH study group, we will describe its work methodology, and the results obtained since its birth in 1995.
-
References
- 1 Eurostat . Available at: http://ec.europa.eu/eurostat/statistics-explained/index.php/Fertility_statistics . Accessed October 10, 2015
- 2 Parigi GB. Pediatric surgery in Europe: problems and perspectives. J Ind Assoc Pediatr Surg 2002; 7 (3) 121-129
- 3 Clark RH, Hardin Jr WD, Hirschl RB , et al. Current surgical management of congenital diaphragmatic hernia: a report from the Congenital Diaphragmatic Hernia Study Group. J Pediatr Surg 1998; 33 (7) 1004-1009
- 4 The Congenital Diaphragmatic Hernia Study Group. Does extracorporeal membrane oxygenation improve survival in neonates with congenital diaphragmatic hernia? The Congenital Diaphragmatic Hernia Study Group. J Pediatr Surg 1999; 34 (5) 720-724 , discussion 724–725
- 5 Congenital Diaphragmatic Hernia Study Group. Estimating disease severity of congenital diaphragmatic hernia in the first 5 minutes of life. J Pediatr Surg 2001; 36 (1) 141-145
- 6 Neville HL, Jaksic T, Wilson JM , et al; Congenital Diaphragmatic Hernia Study Group. Fryns syndrome in children with congenital diaphragmatic hernia. J Pediatr Surg 2002; 37 (12) 1685-1687
- 7 Neville HL, Jaksic T, Wilson JM , et al; Congenital Diaphragmatic Hernia Study Group. Bilateral congenital diaphragmatic hernia. J Pediatr Surg 2003; 38 (3) 522-524
- 8 Lally KP, Lally PA, Langham MR , et al; Congenital Diaphragmatic Hernia Study Group. Surfactant does not improve survival rate in preterm infants with congenital diaphragmatic hernia. J Pediatr Surg 2004; 39 (6) 829-833
- 9 Van Meurs K ; Congenital Diaphragmatic Hernia Study Group. Is surfactant therapy beneficial in the treatment of the term newborn infant with congenital diaphragmatic hernia?. J Pediatr 2004; 145 (3) 312-316
- 10 Colby CE, Lally KP, Hintz SR , et al; Congenital Diaphragmatic Hernia Study Group. Surfactant replacement therapy on ECMO does not improve outcome in neonates with congenital diaphragmatic hernia. J Pediatr Surg 2004; 39 (11) 1632-1637
- 11 Graziano JN ; Congenital Diaphragmatic Hernia Study Group. Cardiac anomalies in patients with congenital diaphragmatic hernia and their prognosis: a report from the Congenital Diaphragmatic Hernia Study Group. J Pediatr Surg 2005; 40 (6) 1045-1049 , discussion 1049–1050
- 12 Kitano Y, Lally KP, Lally PA ; Congenital Diaphragmatic Hernia Study Group. Late-presenting congenital diaphragmatic hernia. J Pediatr Surg 2005; 40 (12) 1839-1843
- 13 Lally KP, Bagolan P, Hosie S , et al; Congenital Diaphragmatic Hernia Study Group. Corticosteroids for fetuses with congenital diaphragmatic hernia: can we show benefit?. J Pediatr Surg 2006; 41 (4) 668-674 , discussion 668–674
- 14 Lally KP, Lally PA, Van Meurs KP , et al; Congenital Diaphragmatic Hernia Study Group. Treatment evolution in high-risk congenital diaphragmatic hernia: ten years' experience with diaphragmatic agenesis. Ann Surg 2006; 244 (4) 505-513
- 15 Lally KP, Lally PA, Lasky RE , et al; Congenital Diaphragmatic Hernia Study Group. Defect size determines survival in infants with congenital diaphragmatic hernia. Pediatrics 2007; 120 (3) e651-e657
- 16 Schultz CM, DiGeronimo RJ, Yoder BA ; Congenital Diaphragmatic Hernia Study Group. Congenital diaphragmatic hernia: a simplified postnatal predictor of outcome. J Pediatr Surg 2007; 42 (3) 510-516
- 17 Frenckner BP, Lally PA, Hintz SR, Lally KP ; Congenital Diaphragmatic Hernia Study Group. Prenatal diagnosis of congenital diaphragmatic hernia: how should the babies be delivered?. J Pediatr Surg 2007; 42 (9) 1533-1538
- 18 Stevens TP, van Wijngaarden E, Ackerman KG, Lally PA, Lally KP ; Congenital Diaphragmatic Hernia Study Group. Timing of delivery and survival rates for infants with prenatal diagnoses of congenital diaphragmatic hernia. Pediatrics 2009; 123 (2) 494-502
- 19 Seetharamaiah R, Younger JG, Bartlett RH, Hirschl RB ; Congenital Diaphragmatic Hernia Study Group. Factors associated with survival in infants with congenital diaphragmatic hernia requiring extracorporeal membrane oxygenation: a report from the Congenital Diaphragmatic Hernia Study Group. J Pediatr Surg 2009; 44 (7) 1315-1321
- 20 Bryner BS, West BT, Hirschl RB , et al; Congenital Diaphragmatic Hernia Study Group. Congenital diaphragmatic hernia requiring extracorporeal membrane oxygenation: does timing of repair matter?. J Pediatr Surg 2009; 44 (6) 1165-1171 , discussion 1171–1172
- 21 Dassinger MS, Copeland DR, Gossett J, Little DC, Jackson RJ, Smith SD ; Congenital Diaphragmatic Hernia Study Group. Early repair of congenital diaphragmatic hernia on extracorporeal membrane oxygenation. J Pediatr Surg 2010; 45 (4) 693-697
- 22 Tsao K, Allison ND, Harting MT, Lally PA, Lally KP. Congenital diaphragmatic hernia in the preterm infant. Surgery 2010; 148 (2) 404-410
- 23 van den Hout L, Reiss I, Felix JF , et al; Congenital Diaphragmatic Hernia Study Group. Risk factors for chronic lung disease and mortality in newborns with congenital diaphragmatic hernia. Neonatology 2010; 98 (4) 370-380
- 24 Tsao K, Lally PA, Lally KP ; Congenital Diaphragmatic Hernia Study Group. Minimally invasive repair of congenital diaphragmatic hernia. J Pediatr Surg 2011; 46 (6) 1158-1164
- 25 Yoder BA, Lally PA, Lally KP ; Congenital Diaphragmatic Hernia Study Group. Does a highest pre-ductal O(2) saturation <85% predict non-survival for congenital diaphragmatic hernia?. J Perinatol 2012; 32 (12) 947-952
- 26 Menon SC, Tani LY, Weng HY, Lally PA, Lally KP, Yoder BA ; Congenital Diaphragmatic Hernia Study Group. Clinical characteristics and outcomes of patients with cardiac defects and congenital diaphragmatic hernia. J Pediatr 2013; 162 (1) 114-119.e2
- 27 Ben-Ishay O, Johnson VM, Wilson JM, Buchmiller TL. Congenital diaphragmatic hernia associated with esophageal atresia: incidence, outcomes, and determinants of mortality. J Am Coll Surg 2013; 216 (1) 90-95.e2
- 28 Morini F, Valfrè L, Capolupo I, Lally KP, Lally PA, Bagolan P ; Congenital Diaphragmatic Hernia Study Group. Congenital diaphragmatic hernia: defect size correlates with developmental defect. J Pediatr Surg 2013; 48 (6) 1177-1182
- 29 Cauley RP, Stoffan A, Potanos K , et al; Congenital Diaphragmatic Hernia Study Group. Pulmonary support on day 30 as a predictor of morbidity and mortality in congenital diaphragmatic hernia. J Pediatr Surg 2013; 48 (6) 1183-1189
- 30 Levy SM, Lally PA, Lally KP, Tsao K ; Congenital Diaphragmatic Hernia Study Group. The impact of chylothorax on neonates with repaired congenital diaphragmatic hernia. J Pediatr Surg 2013; 48 (4) 724-729
- 31 Lally KP, Lasky RE, Lally PA , et al; Congenital Diaphragmatic Hernia Study Group. Standardized reporting for congenital diaphragmatic hernia—an international consensus. J Pediatr Surg 2013; 48 (12) 2408-2415
- 32 Hollinger LE, Lally PA, Tsao K, Wray CJ, Lally KP ; Congenital Diaphragmatic Hernia Study Group. A risk-stratified analysis of delayed congenital diaphragmatic hernia repair: does timing of operation matter?. Surgery 2014; 156 (2) 475-482
- 33 Brindle ME, Cook EF, Tibboel D, Lally PA, Lally KP ; Congenital Diaphragmatic Hernia Study Group. A clinical prediction rule for the severity of congenital diaphragmatic hernias in newborns. Pediatrics 2014; 134 (2) e413-e419
- 34 Skarda DE, Yoder BA, Anstadt EE , et al. Epoprostenol Does Not Affect Mortality in Neonates with Congenital Diaphragmatic Hernia. Eur J Pediatr Surg 2015; 25 (5) 454-459
- 35 Riverius L. Observatio LXVII: Situs ventriculi monstruosus. In: Riverius L, Jacoz S, eds. Observationum Medicarum & Curationum Insignum. Centuria Quarta. Apud Adrianum Vlacq: Hagae Comitum; 1662: 37