Eur J Pediatr Surg 2024; 34(02): 137-142
DOI: 10.1055/a-2206-6837
Review Article

The French Experience with a Population-Based Esophageal Atresia Registry (RENATO)

1   Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Reference Center for Congenital and Malformative Esophageal Disorders, Jeanne de Flandre Children's Hospital, Lille University Faculty of Medicine, Lille Cedex, Lille, France
,
Madeleine Aumar
1   Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Reference Center for Congenital and Malformative Esophageal Disorders, Jeanne de Flandre Children's Hospital, Lille University Faculty of Medicine, Lille Cedex, Lille, France
,
Dyuti Sharma
1   Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Reference Center for Congenital and Malformative Esophageal Disorders, Jeanne de Flandre Children's Hospital, Lille University Faculty of Medicine, Lille Cedex, Lille, France
,
Julien Labreuche
2   SEED: Statistique, Evaluation, Economique, Data-Management Maison Régionale de la Recherche Clinique University Hospital of Lille, France - Health Statistics, Lille, France
,
Luc Dauchet
3   Department of Epidemiology and Public Health, University Hospital of Lille, France - Public Health, Lille, France
,
Frederic Gottrand
1   Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Reference Center for Congenital and Malformative Esophageal Disorders, Jeanne de Flandre Children's Hospital, Lille University Faculty of Medicine, Lille Cedex, Lille, France
› Author Affiliations

Abstract

This paper presented a national register for esophageal atresia (EA) started in January 2008. We report our experience about the conception of this database and its coordination. Data management and data quality are also detailed. In 2023, more than 2,500 patients with EA are included. Prevalence of EA in France was calculated at 1.8/10,000 live birth. Main clinical results are listed with scientific publications issued directly from the register.



Publication History

Received: 05 November 2023

Accepted: 07 November 2023

Accepted Manuscript online:
08 November 2023

Article published online:
22 January 2024

© 2024. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 
  • References

  • 1 Kölker S, Gleich F, Mütze U, Opladen T. Rare disease registries are key to evidence-based personalized medicine: highlighting the European experience. Front Endocrinol (Lausanne) 2022; 13: 832063
  • 2 Hageman IC, van Rooij IALM, de Blaauw I, Trajanovska M, King SK. A systematic overview of rare disease patient registries: challenges in design, quality management, and maintenance. Orphanet J Rare Dis 2023; 18 (01) 106
  • 3 Garabedian C, Verpillat P, Czerkiewicz I. et al. Does a combination of ultrasound, MRI, and biochemical amniotic fluid analysis improve prenatal diagnosis of esophageal atresia?. Prenat Diagn 2014; 34 (09) 839-842
  • 4 Bogusz B, Patkowski D, Gerus S, Rasiewicz M, Górecki W. Staged thoracoscopic repair of long-gap esophageal atresia without temporary gastrostomy. J Laparoendosc Adv Surg Tech A 2018; 28 (12) 1510-1512
  • 5 Sfeir R, Bonnard A, Khen-Dunlop N. et al. Esophageal atresia: data from a national cohort. J Pediatr Surg 2013; 48 (08) 1664-1669
  • 6 European platform for rare diseases: at: https://eu-rd-platform.jrc.ec.europa.eu/eurocat/eurocat-data/prevalence_en
  • 7 Sfeir R, Michaud L, Salleron J, Gottrand F. Epidemiology of esophageal atresia. Dis Esophagus 2013; 26 (04) 354-355
  • 8 Sfeir R, Michaud L, Sharma D, Richard F, Gottrand F. National esophageal atresia register. Eur J Pediatr Surg 2015; 25 (06) 497-499
  • 9 Sfeir R, Rousseau V, Bonnard A. et al. Risk factors of early mortality and morbidity in esophageal atresia with distal tracheoesophageal fistula: a population-based cohort study. J Pediatr 2021; 234: 99-105.e1
  • 10 Garabedian C, Sfeir R, Langlois C. et al. Does prenatal diagnosis modify neonatal treatment and early outcome of children with esophageal atresia?. J Gynecol Obstet Biol Reprod (Paris) 2015; 212 (03) 340
  • 11 Garabedian C, Bonnard A, Rousseau V. et al; CRACMO. Management and outcome of neonates with a prenatal diagnosis of esophageal atresia type A: a population-based study. Prenat Diagn 2018; 38 (07) 517-522
  • 12 Bourg A, Gottrand F, Parmentier B. et al. Outcome of long gap esophageal atresia at 6 years: a prospective case control cohort study. J Pediatr Surg 2023; 58 (04) 747-755
  • 13 Schneider A, Blanc S, Bonnard A. et al. Results from the French national esophageal atresia register: one-year outcome. Orphanet J Rare Dis 2014; 9: 206
  • 14 Depoortere S, Lapillonne A, Sfeir R. et al. Nutritional status at age 1 year in patients born with esophageal atresia: a population-based, prospective cohort study. Front Pediatr 2022; 10: 969617
  • 15 François B, Michaud L, Sfeir R. et al. Predictors of the performance of early antireflux surgery in esophageal atresia. J Pediatr 2019; 211: 120-125.e1
  • 16 Lejeune S, Sfeir R, Rousseau V. et al. Esophageal atresia and respiratory morbidity. Pediatrics 2021; 148 (03) e2020049778
  • 17 Aumar M, Sfeir R, Pierache A, Turck D, Gottrand F. CRACMO. Predictors of anastomotic strictures following oesophageal atresia repair. Arch Dis Child Fetal Neonatal Ed 2022; 107 (05) 545-550
  • 18 Bisson B, Gottrand L, Aumar M. et al. Prevalence of and risk factors for sagittal posture abnormalities in children born with esophageal atresia: a prospective cohort study. Front Pediatr 2021; 9: 762078
  • 19 Expertscape website: https://expertscape.com/ex/esophageal+atresia/c/fr
  • 20 Durakbaşa ÇU, Soyer T, İlhan H. et al. Esophageal atresia associated with congenital duodenal obstruction: Turkish Esophageal Atresia Registry (TEAR) evaluation. Eur J Pediatr Surg 2023; DOI: 10.1055/a-2123-5026.
  • 21 Cömert HSY, Güney D, Durakbaşa ÇU. et al. The effect of postoperative ventilation strategies on postoperative complications and outcomes in patients with esophageal atresia: results from the Turkish Esophageal Atresia Registry. Pediatr Pulmonol 2023; 58 (03) 763-771
  • 22 Gottrand F, Ley D, Michaud L, Sfeir R. Importance of an international registry for and collaborative research on esophageal atresia. Front Pediatr 2017; 5: 81
  • 23 OESOMICS. Molecular signatures of esophageal atresia: towards the identification of the molecular causes of the different forms of esophageal atresia and prenatal diagnosis. ; 2023. Available at: https://anr.fr/Project-ANR-21-CE17-0042