French national competence center for congenital diaphragmatic hernia
The Necker-Enfants malades hospital has been offering a coordinated care pathway for patients with congenital diaphragmatic hernia since 2009.
It is characterized by multidisciplinary care from the antenatal period (based on a three-pillar expertise in fetal medicine/neonatology/visceral surgery, including availability of FETO treatment) to long-term follow-up (based on a three-pillar expertise in visceral surgery/neonatology/pediatric pneumology).
The center provides high-level expertise beyond its population pool – including French overseas territories, as well as for patients with polymalformation or congenital heart disease/pulmonary hypertension.
This reference center is affiliated to the Fimatho rare diseases healthcare network and the Ernica European reference network (ERN).
The new version of the national diagnostic and care protocol (PNDS) « congenital diaphragmatic hernia » is now available !
Reviewed in 2019-2020 by the reference center for congenital diaphragmatic hernia , the FIMATHO network and the patient associations APHEDia and LEONORE, the national diagnostic and care protocol (PNDS) « congenital diaphragmatic hernia » was put online this Tuesday, October 27, 2020 on the site of the High Authority of Health (HAS).
>> Consult the national diagnostic and care protocol
Medical
team
Pr Elsa Kermorvant
MD, PhD
Dr Naziha Khen-Dunlop
MD, PhD
Contact us
Phone. +33 1 71 19 62 19
- Congenital diaphragmatic hernia
- Anterior retrocostoxiphoid diaphragmatic hernia
- Diaphragmatic eventration
Obstetrics / prenatal diagnosis – fetal surgery
- Pr Julien Stirnemann
- Pr Yves Ville
Fetal imaging (MRI)
- Dr Pascale Sonigo
- Dr Anne-Elodie Millischer-Bellaïche
Neonatal intensive care
- Pr Elsa Kermorvant
- Pr Alexandre Lapillonne
Surgery
- Dr Naziha Khen-Dunlop
- Dr Véronique Rousseau
- Dr Sylvie Beaudoin
Pediatric pulmonology
- Pr Christophe Delacourt
Lung function assessment
- Pr Brigitte Fauroux
Pediatric cardiology
- Dr Maryline Levy
Pediatric orthopedics
- Pr Christophe Glorion
The center is involved in research activities concerning diaphragmatic hernia:
- particularly within the framework of the TOTAL therapeutic trial, in particular the « Randomized trial of fetoscopic endoluminal tracheal occlusion (FETO) versus expectant management during pregnancy in fetuses with left sided and isolated congenital diaphragmatic hernia and moderate pulmonary hypoplasia »;
- and within the framework of studies carried out using the French register of diaphragmatic hernias of the reference center for rare diseases.
Teaching the care of dome hernia within the framework of the following diploma courses
DESC de néonatologie Île-de-France
IUD medicine and neonatal resuscitation
University of Paris
Master’s degree in cell biology, physiology and pathology: clinical research in fetal physiopathology
University of Paris
IUD gynecological and obstetrical ultrasound – Necker pathway
University of Paris
IUD fetal medicine
University of Paris
One-Year Outcome for Congenital Diaphragmatic Hernia: Results From the French National Register.
Barrière F, Michel F, Loundou AD, Fouquet V, Kermorvant E, Blanc S, Carricaburu E, Desrumaux A, Pidoux O, Arnaud A, Berte N, Blanc T, Lavrand F, Levard G, Rayet I, Samperiz S, Schneider A, Marcoux MO, Winer N, Chaussy Y, Datin-Dorriere V, Ballouhey Q, Binet A, Muszynski C, Breaud J, Garenne A, Storme L, Boubnova J; Center for Rare Diseases for Congenital Diaphragmatic Hernia.
J Pediatr. 2018 Feb;193:204-210. doi: 10.1016/j.jpeds.2017.09.074. Epub 2017 Dec 6.
Risk of Readmission for Wheezing during Infancy in Children with Congenital Diaphragmatic Hernia.
Benoist G, Mokhtari M, Deschildre A, Khen-Dunlop N, Storme L, Benachi A, Delacourt C.
PLoS One. 2016 May 12;11(5):e0155556. doi: 10.1371/journal.pone.0155556. eCollection 2016.
Prenatal prediction of pulmonary arterial hypertension in congenital diaphragmatic hernia.
Spaggiari E, Stirnemann JJ, Sonigo P, Khen-Dunlop N, De Saint Blanquat L, Ville Y.
Ultrasound Obstet Gynecol. 2015 May;45(5):572-7. doi: 10.1002/uog.13450.
Congenital diaphragmatic hernia: does gestational age at diagnosis matter when evaluating morbidity and mortality?
Bouchghoul H, Senat MV, Storme L, de Lagausie P, Begue L, Khen-Dunlop N, Bouyer J, Benachi A; Center for Rare Diseases for Congenital Diaphragmatic Hernia.
Am J Obstet Gynecol. 2015 Oct;213(4):535.e1-7. doi: 10.1016/j.ajog.2015.06.012. Epub 2015 Jun 10.
Characteristics and management of congenital esophageal stenosis: findings from a multicenter study.
Michaud L, Coutenier F, Podevin G, Bonnard A, Becmeur F, Khen-Dunlop N, Auber F, Maurel A, Gelas T, Dassonville M, Borderon C, Dabadie A, Weil D, Piolat C, Breton A, Djeddi D, Morali A, Bastiani F, Lamireau T, Gottrand F.
Orphanet J Rare Dis. 2013 Dec 1;8:186. doi: 10.1186/1750-1172-8-186.
Diaphragmatic function in infants and children with congenital diaphragmatic hernia: a cross-sectional study.
Khirani S, Amaddeo A, Khen-Dunlop N, Olmo Arroyo J, Lapillonne A, Becquet O, Kermorvant-Duchemin E, Beaudoin S, Rousseau V, Delacourt C, Fauroux B.
Eur J Cardiothorac Surg. 2018 Apr 1;53(4):740-747. doi: 10.1093/ejcts/ezx391
Contact information
Necker-Enfants malades university hospital
> Neonatology and neonatal resuscitation department
149 rue de Sèvres
75743 PARIS Cedex 15
In Necker, the competence center for congenital diaphragmatic hernia in brief …
* data valid for 2015