ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. The network was officially launched in March 2017.
ERNICA is a network of expert multi-disciplinary healthcare professionals from specialised healthcare providers across Europe (‘ERNICA members’). ERNICA has 40 member hospitals across 12 EU/EEA countries.
‘Affiliated partners’ and patient organisations/representatives also form part of the network.
ERNICA aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. Such health goals include:
In 2018, the first ERNICA consensus conference took place on the management of patients with esophageal atresia and tracheoesophageal fistula. As a result of this conference, two papers were published in the European Journal of Pediatric Surgery.
1. ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Diagnostics, Preoperative, Operative, and Postoperative Management (published online July, 2019): HTML version , PDF.
2. ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Follow-up and Framework (published online November, 2019): HTML version , PDF
A second ERNICA consensus conference on the perioperative, surgical and long-term management of patients with long-gap esophageal atresia took place in November 2019 and a subsequent paper was published online in the European Journal of Pediatric Surgery in July 2020.
Documents summarising the outcome of the consensus conferences for patients and their families are also available, with explanations provided for items that are considered particularly important to understand:
Summary document (in English) on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Diagnostics, Preoperative, Operative, Postoperative Management, Follow-up and Framework.
Summary document (in English) on the Perioperative, Surgical and Long-term Management of Patients with Long-gap Esophageal Atresia.
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