DOI: 10.1097/MPG.0b013e3182116187

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PMID: 21499033

Issn Print: 0277-2116

Publication Date: 2011/05/01


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Why Organize a Workshop on Esophageal Atresia?

Frédéric Gottrand; Rony Sfeir; Laurent Michaud

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Excerpt

A rare disease is generally considered to have a prevalence of fewer than 5 affected individuals per 10,000 people. Recent initiatives have been taken by governmental and nongovernmental organizations to stimulate research and collaborative projects in this area. In the framework of the French National Plan for Rare Diseases, our centre was appointed as the French Reference Centre for Congenital and Malformative Diseases of the Esophagus in 2006. Its specific aims were to organize and harmonize care at a national level, to promote research and epidemiological studies on esophageal atresia, to inform the general population and stakeholders about this rare disease, and develop collaboration with family support groups. Rare diseases are also 1 of the priorities in the second programme of community action in the field of health (2008–2013) of the European Union, which promotes exchange of information and transnational cooperation. One of the goals of this programme is to improve information and knowledge with a view to promoting public health and health systems actions in the field of rare diseases.
Esophageal atresia is indeed a rare disease, with an incidence of 1/3000. Recent advances in surgery and neonatal care have provided a better prognosis; the survival rate of infants born with esophageal atresia has improved dramatically during the last decade, increasing from 80% to more than 95%. Esophageal atresia is definitively not only a neonatal surgical issue but also a long-lasting disease through adulthood because many problems (feeding difficulties, respiratory, digestive, growth) persist long term. In particular, the question of esophageal mucosa outcome (Barrett esophagus, esophageal cancer) remains an important challenge for the future.
The aim of this first international workshop was to address the most recent questions and challenges for the future. It gathered the best European and North American specialists in the field who discussed a large range of aspects from genetics, epidemiology, neonatal screening, surgical challenges, digestive, and ENT/respiratory aspects to psychosocial aspects and roles of patients’ associations. More than 250 attendees participated in the workshop from 29 different countries; participants were paediatricians (gastroenterologists but also neonatologists and pulmonologists), pediatric surgeons, radiologists, obstetricians, geneticians, nurses, speech-language pathologists, and family support group members. More than 65 original communications were presented. The meeting was an opportunity to share experience and the transdisciplinary approach of this malformation. This supplement to the Journal of Pediatric Gastroenterology and Nutrition reports the results of the meeting.
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