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.
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 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 (in English and German), 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.
Summary documents (in German) on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Diagnostics, Preoperative, Operative, Postoperative Management, Follow-up and Framework & Perioperative, Surgical and Long-term Management of Patients with Long-gap Esophageal Atresia (developed by KEKS, the German patient organisation for Esophageal Atresia)
Intestinal Diseases:
Hirschsprung's Disease
The ERNICA guideline for the management of rectosigmoid Hirschsprung's disease was published online in the Orphanet Journal for Rare Diseases in June 2020. An ERNICA summary of the guideline for clinicians has been produced (in English). This is also available in Finnish and in Swedish.
A version tailored specifically for patients and their families is currently in development.
Total Colonic Aganglionosis
An ERNICA consensus statement is currently being developed. A version tailored specifically for patients and their families will be developed thereafter.
Necrotising Enterocolitis
An ERNICA guideline is currently being developed. A version tailored specifically for patients and their families will be developed thereafter.
Abdominal Wall Defects:
Gastroschisis
An ERNICA guideline is currently being developed. A version tailored specifically for patients and their families will be developed thereafter.
Patient Journeys
The ERNICA patient journey project is disease-specific and seeks 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. This project is a collaborative project between clinicians and patient representatives. Click here for more information.