Standards of Care

Clinical guidelines / consensus statements:

For some rare or complex conditions, there are no clinical guidelines or consensus statements available at present. For some diseases, these are available but some may require review and revision.

ERNICA seeks to endorse, develop or revise existing clinical guidelines and consensus documents to ensure clinical recommendations are made available to clinicians, patients and their families based on research of the highest quality. Patient representatives and healthcare professionals are involved in this within ERNICA. 

Esophageal Diseases:

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. 

Intestinal Diseases:

A guideline on Hirschsprung Disease is in development and due for publication. Discussions have also started in regards to the development of a guideline on total colonic aganglionosis. 

Malformations of the diaphragm and abdominal wall:

Discussions have started in regards to the development of a guideline on gastroschisis.

Patient Journeys:

ERNICA clinicians and patient representatives within the esophageal diseases working group have been developing a 'patient journey' for esophageal atresia. This project is led by patient representatives from ‘EAT’, the international federation of esophageal atresia support groups. 

The project sets out to describe the patient's journey at a number of key stages in the patient’s life from possible pre-natal diagnosis to adulthood, identifying key issues and relevant good practice at each stage.