{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T03:20:00Z","timestamp":1782789600156,"version":"3.54.5"},"reference-count":55,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2021,2,20]],"date-time":"2021-02-20T00:00:00Z","timestamp":1613779200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>Congenital diaphragmatic hernia (CDH) is a major congenital malformation with high mortality. Outcome data on larger unselected patient groups in Germany are unavailable as there is no registry for CDH. Therefore, routine data from the largest German health insurance fund were analyzed for the years 2009\u20132013. Main outcome measures were incidence, survival and length of hospital stay. Follow-up was 12 months. 285 patients were included. The incidence of CDH was 2.73 per 10,000 live births. Overall mortality was 30.2%. A total of 72.1% of the fatalities occurred before surgery. Highest mortality (64%) was noted in patients who were admitted to specialized care later as the first day of life. Patients receiving surgical repair had a better prognosis (mortality: 10.8%). A total of 67 patients (23.5%) were treated with ECMO with a mortality of 41.8%. The median cumulative hospital stay among one-year survivors was 40 days and differed between ECMO- and non-ECMO-treated patients (91 vs. 32.5 days, p &lt; 0.001). This is the largest German cohort study of CDH patients with a one-year follow-up. The ECMO subgroup showed a higher mortality. Another important finding is that delayed treatment in specialized care increases mortality. Prospective clinical registries are needed to elucidate the treatment outcomes in detail.<\/jats:p>","DOI":"10.3390\/children8020160","type":"journal-article","created":{"date-parts":[[2021,2,21]],"date-time":"2021-02-21T21:15:01Z","timestamp":1613942101000},"page":"160","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Epidemiology and One-Year Follow-Up of Neonates with CDH-Data from Health Insurance Claims in Germany"],"prefix":"10.3390","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6118-550X","authenticated-orcid":false,"given":"Boris","family":"Wittekindt","sequence":"first","affiliation":[{"name":"Department of Neonatology, University Hospital, Goethe-University, 60590 Frankfurt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nora","family":"Doberschuetz","sequence":"additional","affiliation":[{"name":"Department of Neonatology, University Hospital, Goethe-University, 60590 Frankfurt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7796-3329","authenticated-orcid":false,"given":"Andrea","family":"Schmedding","sequence":"additional","affiliation":[{"name":"Department of Paediatric Surgery and Paediatric Urology, University Hospital, Goethe-University, 60590 Frankfurt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Till-Martin","family":"Theilen","sequence":"additional","affiliation":[{"name":"Department of Paediatric Surgery and Paediatric Urology, University Hospital, Goethe-University, 60590 Frankfurt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rolf","family":"Schloesser","sequence":"additional","affiliation":[{"name":"Department of Neonatology, University Hospital, Goethe-University, 60590 Frankfurt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7273-6055","authenticated-orcid":false,"given":"Stefan","family":"Gfroerer","sequence":"additional","affiliation":[{"name":"Department of Paediatric Surgery, Helios-Klinikum, 13125 Berlin, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1268-6092","authenticated-orcid":false,"given":"Udo","family":"Rolle","sequence":"additional","affiliation":[{"name":"Department of Paediatric Surgery and Paediatric Urology, University Hospital, Goethe-University, 60590 Frankfurt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,2,20]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"F137","DOI":"10.1136\/archdischild-2014-306174","article-title":"Epidemiology of Congenital Diaphragmatic Hernia in Europe: A Register-Based Study","volume":"100","author":"McGivern","year":"2015","journal-title":"Arch. Dis. Child. Fetal Neonatal Ed."},{"key":"ref_2","unstructured":"EUROCAT European Surveillance of Congenital Anomalies (2021, January 04). Cases and Prevalence (per 10,000 Births) of All Congenital Anomaly Subgroups for All Registries, from 2008\u20132012. Available online: https:\/\/eu-rd-platform.jrc.ec.europa.eu."},{"key":"ref_3","unstructured":"(2017). Statistisches Jahrbuch Deutschland 2017. Statistical Yearbook Germany 2017, Statistisches Bundesamt. 1. Auflage."},{"key":"ref_4","unstructured":"(2020, January 10). EUROCAT Prenatal Detection Rates 2011\u20132015. Available online: http:\/\/www.eurocat-network.eu\/newprevdata\/showPDF.aspx?winx=1256&winy=884&file=pd1.aspx."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"270","DOI":"10.1002\/bdra.23240","article-title":"Epidemiology of Multiple Congenital Anomalies in Europe: A EUROCAT Population-Based Registry Study","volume":"100","author":"Calzolari","year":"2014","journal-title":"Birt. Defects Res. A Clin. Mol. Teratol."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"406","DOI":"10.1038\/pcan.2016.33","article-title":"Morbidity and Mortality after Surgery for Lower Urinary Tract Symptoms: A Study of 95\u2009577 Cases from a Nationwide German Health Insurance Database","volume":"19","author":"Gilfrich","year":"2016","journal-title":"Prostate Cancer Prostatic Dis."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"e017460","DOI":"10.1136\/bmjopen-2017-017460","article-title":"Drug-Eluting Stents in Clinical Routine: A 1-Year Follow-up Analysis Based on German Health Insurance Administrative Data from 2008 to 2014","volume":"7","author":"Jeschke","year":"2017","journal-title":"BMJ Open"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"569","DOI":"10.1007\/s00383-020-04647-7","article-title":"Decentralized Surgery of Abdominal Wall Defects in Germany","volume":"36","author":"Schmedding","year":"2020","journal-title":"Pediatr. Surg. Int."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"153","DOI":"10.2214\/AJR.08.1082","article-title":"Congenital Diaphragmatic Hernia: Predictive Value of MRI Relative Lung-to-Head Ratio Compared with MRI Fetal Lung Volume and Sonographic Lung-to-Head Ratio","volume":"192","author":"Kilian","year":"2009","journal-title":"AJR Am. J. Roentgenol."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"354","DOI":"10.1159\/000320622","article-title":"Standardized Postnatal Management of Infants with Congenital Diaphragmatic Hernia in Europe: The CDH EURO Consortium Consensus","volume":"98","author":"Reiss","year":"2010","journal-title":"Neonatology"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"66","DOI":"10.1159\/000444210","article-title":"Standardized Postnatal Management of Infants with Congenital Diaphragmatic Hernia in Europe: The CDH EURO Consortium Consensus\u20142015 Update","volume":"110","author":"Snoek","year":"2016","journal-title":"Neonatology"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"873","DOI":"10.1016\/j.jpedsurg.2009.01.023","article-title":"Canadian Pediatric Surgery Network Effect of Hospital Case Volume on Outcome in Congenital Diaphragmatic Hernia: The Experience of the Canadian Pediatric Surgery Network","volume":"44","author":"Grushka","year":"2009","journal-title":"J. Pediatr. Surg."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"512","DOI":"10.1097\/01.ccm.0000435674.83682.96","article-title":"Pediatric and Neonatal Extracorporeal Membrane Oxygenation: Does Center Volume Impact Mortality?","volume":"42","author":"Freeman","year":"2014","journal-title":"Crit. Care Med."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"977","DOI":"10.1097\/SLA.0000000000002144","article-title":"Aggressive Surgical Management of Congenital Diaphragmatic Hernia: Worth the Effort?: A Multicenter, Prospective, Cohort Study","volume":"267","author":"Harting","year":"2018","journal-title":"Ann. Surg."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"635","DOI":"10.1097\/SLA.0b013e3181f5b538","article-title":"Impact of Hospital Volume on In-Hospital Mortality of Infants Undergoing Repair of Congenital Diaphragmatic Hernia","volume":"252","author":"Bucher","year":"2010","journal-title":"Ann. Surg."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"146","DOI":"10.1016\/j.jpeds.2020.03.028","article-title":"Treating Center Volume and Congenital Diaphragmatic Hernia Outcomes in California","volume":"222","author":"Apfeld","year":"2020","journal-title":"J. Pediatr."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1293","DOI":"10.1007\/s00383-019-04525-x","article-title":"Neonatal Surgery in Low- vs. High-Volume Institutions: A KID Inpatient Database Outcomes and Cost Study after Repair of Congenital Diaphragmatic Hernia, Esophageal Atresia, and Gastroschisis","volume":"35","author":"Shahi","year":"2019","journal-title":"Pediatr. Surg. Int."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1007\/s00404-007-0407-4","article-title":"Congenital Diaphragmatic Hernia, Etiology and Management, a 10-Year Analysis of a Single Center","volume":"277","author":"Beck","year":"2008","journal-title":"Arch. Gynecol. Obstet."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"e1","DOI":"10.1055\/s-0031-1299731","article-title":"Stabilisation of Cardiopulmonary Function in Newborns with Congenital Diaphragmatic Hernia Using Lung Function Parameters and Hemodynamic Management","volume":"224","author":"Hofmann","year":"2012","journal-title":"Klin. Padiatr."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"1072","DOI":"10.1183\/09031936.00058009","article-title":"The Effect of Surgery on Lung Volume and Conventional Monitoring Parameters in Ventilated Newborn Infants","volume":"35","author":"Freiberger","year":"2010","journal-title":"Eur. Respir. J."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"285","DOI":"10.1089\/lap.2011.0356","article-title":"Perioperative Outcome of Patients with Congenital Diaphragmatic Hernia Undergoing Open versus Minimally Invasive Surgery","volume":"22","author":"Szavay","year":"2012","journal-title":"J. Laparoendosc. Adv. Surg. Tech. A"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"452","DOI":"10.1002\/ppul.23935","article-title":"Continuous Intravenous Sildenafil as an Early Treatment in Neonates with Congenital Diaphragmatic Hernia","volume":"53","author":"Kipfmueller","year":"2018","journal-title":"Pediatr. Pulmonol."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1159\/000480451","article-title":"Congenital Diaphragmatic Hernia: 10-Year Evaluation of Survival, Extracorporeal Membrane Oxygenation, and Foetoscopic Endotracheal Occlusion in Four High-Volume Centres","volume":"113","author":"Snoek","year":"2018","journal-title":"Neonatology"},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"735","DOI":"10.1515\/jpm-2017-0031","article-title":"Early Postnatal Echocardiographic Assessment of Pulmonary Blood Flow in Newborns with Congenital Diaphragmatic Hernia","volume":"46","author":"Kipfmueller","year":"2018","journal-title":"J. Perinat. Med."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"e20162043","DOI":"10.1542\/peds.2016-2043","article-title":"Congenital Diaphragmatic Hernia Study Group Congenital Diaphragmatic Hernia Defect Size and Infant Morbidity at Discharge","volume":"138","author":"Putnam","year":"2016","journal-title":"Pediatrics"},{"key":"ref_26","unstructured":"(2021, January 10). Federal Statistical Office GENESIS-Online: 12411-0001: [Bev\u00f6lkerung: Deutschland, Stichtag] Population: Germany, Deadline. Available online: https:\/\/www-genesis.destatis.de\/genesis\/\/online?operation=table&code=12411-0001&bypass=true&levelindex=0&levelid=1610283403187#abreadcrumb."},{"key":"ref_27","unstructured":"(2021, January 10). Federal Ministry of Health [Mitglieder und Versicherte der Gesetzlichen Krankenversicherung (GKV)] Members and Insured Persons in Statutory Health. Available online: https:\/\/www.bundesgesundheitsministerium.de\/themen\/krankenversicherung\/zahlen-und-fakten-zur-krankenversicherung\/mitglieder-und-versicherte.html."},{"key":"ref_28","unstructured":"(2011). Statistisches Jahrbuch F\u00fcr Die Bundesrepublik Deutschland. Statistical Yearbook for the Federal Republic of Germany, Statistisches Bundesamt. 1. Auflage."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"213","DOI":"10.1007\/s10654-004-6517-4","article-title":"An Easy to Use Method to Approximate Poisson Confidence Limits","volume":"20","author":"Martin","year":"2005","journal-title":"Eur. J. Epidemiol."},{"key":"ref_30","unstructured":"G\u00f6tz, D. (2019, September 26). Annual Report 2014 of the Federal State of Saxony-Anhalt about the Frequency of Congenital Malformations and Anomalies as Well as Chromosomal Aberrations. Available online: http:\/\/www.angeborene-fehlbildungen.com\/monz_mm\/Bericht_2014_engl.pdf."},{"key":"ref_31","first-page":"1121","article-title":"Qualit\u00e4tsmessung bei seltenen Erkrankungen\u2014KinderRegister f\u00fcr angeborene Fehlbildungen\u2014BDC|Online","volume":"10","author":"Schmedding","year":"2020","journal-title":"Passion Chir."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"e413","DOI":"10.1542\/peds.2013-3367","article-title":"Congenital Diaphragmatic Hernia Study Group A Clinical Prediction Rule for the Severity of Congenital Diaphragmatic Hernias in Newborns","volume":"134","author":"Brindle","year":"2014","journal-title":"Pediatrics"},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"250","DOI":"10.1016\/S0003-4975(02)04278-9","article-title":"Outcome at 2 Years of Infants with Congenital Diaphragmatic Hernia: A Population-Based Study","volume":"75","author":"Jaillard","year":"2003","journal-title":"Ann. Thorac. Surg."},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"315","DOI":"10.1038\/sj.jp.7211257","article-title":"Canadian Neonatal Network SNAP-II Predicts Mortality among Infants with Congenital Diaphragmatic Hernia","volume":"25","author":"Skarsgard","year":"2005","journal-title":"J. Perinatol."},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"553","DOI":"10.1038\/jp.2009.194","article-title":"Mortality in Infants with Congenital Diaphragmatic Hernia: A Study of the United States National Database","volume":"30","author":"Aly","year":"2010","journal-title":"J. Perinatol."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"357","DOI":"10.1053\/jpsu.2002.30834","article-title":"Congenital Diaphragmatic Hernia in 120 Infants Treated Consecutively with Permissive Hypercapnea\/Spontaneous Respiration\/Elective Repair","volume":"37","author":"Boloker","year":"2002","journal-title":"J. Pediatr. Surg."},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"e356","DOI":"10.1542\/peds.2004-2845","article-title":"Outcomes of Congenital Diaphragmatic Hernia: A Population-Based Study in Western Australia","volume":"116","author":"Colvin","year":"2005","journal-title":"Pediatrics"},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"649","DOI":"10.1016\/S0140-6736(09)61922-X","article-title":"20-Year Survival of Children Born with Congenital Anomalies: A Population-Based Study","volume":"375","author":"Tennant","year":"2010","journal-title":"Lancet Lond. Engl."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1016\/j.jpedsurg.2017.10.027","article-title":"Right versus Left Congenital Diaphragmatic Hernia\u2014What\u2019s the Difference?","volume":"53","author":"Burgos","year":"2017","journal-title":"J. Pediatr. Surg."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"276","DOI":"10.1002\/uog.3863","article-title":"Prenatal Detection and Outcome of Congenital Diaphragmatic Hernia: A French Registry-Based Study","volume":"29","author":"Gallot","year":"2007","journal-title":"Ultrasound Obstet. Gynecol."},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"204","DOI":"10.1016\/j.jpeds.2017.09.074","article-title":"One-Year Outcome for Congenital Diaphragmatic Hernia: Results From the French National Register","volume":"193","author":"Michel","year":"2018","journal-title":"J. Pediatr."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"F517","DOI":"10.1136\/archdischild-2017-313933","article-title":"BAPS-CASS Early Population-Based Outcomes of Infants Born with Congenital Diaphragmatic Hernia","volume":"103","author":"Long","year":"2018","journal-title":"Arch. Dis. Child. Fetal Neonatal Ed."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"F643","DOI":"10.1136\/archdischild-2018-316396","article-title":"BAPS-CASS One-Year Outcomes of Infants Born with Congenital Diaphragmatic Hernia: A National Population Cohort Study","volume":"104","author":"Long","year":"2019","journal-title":"Arch. Dis. Child. Fetal Neonatal Ed."},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"654","DOI":"10.1038\/jp.2016.26","article-title":"Predicting Death or Extended Length of Stay in Infants with Congenital Diaphragmatic Hernia","volume":"36","author":"Murthy","year":"2016","journal-title":"J. Perinatol."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"1038","DOI":"10.1055\/s-0035-1548729","article-title":"Short-Term Outcomes and Medical and Surgical Interventions in Infants with Congenital Diaphragmatic Hernia","volume":"32","author":"Grover","year":"2015","journal-title":"Am. J. Perinatol."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"1107","DOI":"10.1002\/bdr2.1357","article-title":"Trends, Correlates, and Survival of Infants with Congenital Diaphragmatic Hernia and Its Subtypes","volume":"110","author":"Ramakrishnan","year":"2018","journal-title":"Birth Defects Res."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"1451","DOI":"10.1002\/bdr2.1106","article-title":"Epidemiology and Prognosis of Congenital Diaphragmatic Hernia: A Population-Based Cohort Study in Utah","volume":"109","author":"Shanmugam","year":"2017","journal-title":"Birth Defects Res."},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"2818","DOI":"10.1007\/s00464-015-4560-8","article-title":"Thoracoscopic versus Open Repair of CDH in Cardiovascular Stable Neonates","volume":"30","author":"Costerus","year":"2016","journal-title":"Surg. Endosc."},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"416","DOI":"10.1016\/j.jamcollsurg.2016.12.050","article-title":"Minimally Invasive vs. Open Congenital Diaphragmatic Hernia Repair: Is There a Superior Approach?","volume":"224","author":"Putnam","year":"2017","journal-title":"J. Am. Coll. Surg."},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"465","DOI":"10.1007\/s00383-015-3695-y","article-title":"Outcome of Right-Sided Diaphragmatic Hernia Repair: A Multicentre Study","volume":"31","author":"Duess","year":"2015","journal-title":"Pediatr. Surg. Int."},{"key":"ref_51","doi-asserted-by":"crossref","first-page":"305","DOI":"10.1002\/bjs5.50135","article-title":"One-Year Outcomes for Congenital Diaphragmatic Hernia","volume":"3","author":"Wang","year":"2019","journal-title":"BJS Open"},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"695","DOI":"10.1016\/j.jpedsurg.2016.02.005","article-title":"Congenital Diaphragmatic Hernia\u2014The Past 25 (or so) Years","volume":"51","author":"Lally","year":"2016","journal-title":"J. Pediatr. Surg."},{"key":"ref_53","doi-asserted-by":"crossref","first-page":"1995","DOI":"10.1016\/j.jpedsurg.2013.02.041","article-title":"Developmental Outcomes of Children with Congenital Diaphragmatic Hernia: A Multicenter Prospective Study","volume":"48","author":"Wynn","year":"2013","journal-title":"J. Pediatr. Surg."},{"key":"ref_54","doi-asserted-by":"crossref","unstructured":"Benoist, G., Mokhtari, M., Deschildre, A., Khen-Dunlop, N., Storme, L., Benachi, A., and Delacourt, C. (2016). Risk of Readmission for Wheezing during Infancy in Children with Congenital Diaphragmatic Hernia. PLoS ONE, 11.","DOI":"10.1371\/journal.pone.0155556"},{"key":"ref_55","doi-asserted-by":"crossref","first-page":"134","DOI":"10.1053\/j.sempedsurg.2007.01.009","article-title":"Long-Term Follow up of Infants with Congenital Diaphragmatic Hernia","volume":"16","author":"Bagolan","year":"2007","journal-title":"Semin. Pediatr. Surg."}],"container-title":["Children"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2227-9067\/8\/2\/160\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T05:26:52Z","timestamp":1760160412000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2227-9067\/8\/2\/160"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,2,20]]},"references-count":55,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2021,2]]}},"alternative-id":["children8020160"],"URL":"https:\/\/doi.org\/10.3390\/children8020160","relation":{},"ISSN":["2227-9067"],"issn-type":[{"value":"2227-9067","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,2,20]]}}}