International Network Of Esophageal Atresia
Esophageal atresia is the most frequent digestive malformation occurring in ~1:3,000 births worldwide. Since the first successful primary repair in 1941, postoperative outcomes have changed. With the exception of patients suffering from severe associated malformations, improvements in operative and perioperative care issues evolved from mortality to morbidity and quality of life issues. Esophageal atresia is no more a neonatal surgical problem but a long life problem. Indeed, respiratory problems, nutritional and gastroenterological issues are the most prevalent not only in the first years of life but also in adolescence and adulthood. Two previous international meetings on esophageal atresia held in Lille, France in 2010 and in Montreal, Canada in 2012 putting together multidisciplinary teams dedicated to the care of EA patients all over the world have showed the necessity of a systematic approach of these patients. Following these events an International Network Of Esophageal Atresia (INoEA) was created in February 2013 whose ambition is to enhance international collaboration regarding esophageal atresia.
Frédéric Gottrand and Rene Wijnen on behalf of the steering committee
- EA is a rare disease and therefore requires large cohorts from different centres/countries to make progress in understanding the disease, defining standard of care, developing innovative approach, obtaining information on outcome and prognosis
- There have been recently national initiatives (i.e. Canada, France, European Union…) to encourage networks on rare diseases
- Family support groups are active and starting to build international family support group confederation (ie EAT in Europe and Australia)
- There is a need for a multidisciplinary approach of EA (surgeons, neonatologists, prenatal diagnosis health professionals, geneticists, specialized pediatricians (gastro/pulmonologist…), speech therapists, psychologist, nurses…
- The 2 first meetings on EA held in Lille (2010) and Montreal (2012) demonstrated a great interest for such meetings and the need for collaborative work and research projects.
- To organize every 2 years an international meeting on EA
- To initiate international consensus and guidelines on EA
- To initiate international collaborative research programs
A steering committee including representative of the most active groups in the world to coordinate the activities of the network was created in February 2013.
- Frederic Gottrand (Lille) president (PedGI)
- Christophe Faure (Montreal) vice president (PedGI)
- René Wijnen (Rotterdam) (Pediatric surgeon)
- Arnold Coran (USA) (Pediatric surgeon)
- Luigi Dall’oglio (Rome) (Pediatric surgeon)
- Risto Rintala (Helsinki) (Pediatric surgeon)
- Robin Cotton (Cincinnati) (ENT)
- Tom Kovesi (Ottawa) (Pediatric pulmonologist)
- Usha Krishnan (Sydney) (PedGI)