Guidelines
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.
To safeguard the scientific integrity of our guidelines and consensus statements, ERNICA partners with the specialized professional organization Qualicura in their development. Within Qualicura, we closely collaborate with Willemijn, a methodologist, to ensure thoroughness and accuracy.
For inquiries about the methodology employed in guideline development, please reach out to: w.irvine@erasmusmc.nl
For questions regarding ERNICA guideline development in general, feel free to contact:
ern-ernica@erasmusmc.nl
Willemijn Irvine
ERNICA Methodologist
Guidelines and Consensus Statements produced by ERNICA
Title | Type of Document | Public Access Link |
|---|---|---|
ERNICA evidence based guideline on omphalocele (2026) | Evidence Based Guideline | https://pmc.ncbi.nlm.nih.gov/articles/PMC13162432/ |
Updated ERNICA guidelines for the management of rectosigmoid Hirschsprung's disease (2025) | Evidence Based Guideline | https://onlinelibrary.wiley.com/doi/10.1002/jpn3.70442 |
European reference network for rare inherited congenital anomalies (ERNICA) evidence based guideline on the management of gastroschisis (2024) | Evidence Based Guideline | https://pubmed.ncbi.nlm.nih.gov/38347519/ |
European Reference Network for Inherited and Congenital Anomalies Evidence-Based Guideline on Surgical Aspects of Necrotizing Enterocolitis in Premature Neonates (2024) | Evidence Based Guideline | https://pmc.ncbi.nlm.nih.gov/articles/PMC12129410/ |
Summary: European Reference Network for Inherited and Congenital Anomalies Evidence-Based Guideline on Surgical Aspects of Necrotizing Enterocolitis in Premature Neonates (2024) | Summary Document | https://karger.com/neo/article-pdf/122/3/376/4302233/000542540.pdf |
Ernica Clinical Consensus Statements on Total Colonic and Intestinal Aganglionosis (2024) | Consensus Statement | https://www.sciencedirect.com/science/article/pii/S0022346824002951?via%3Dihub |
ERNICA Consensus Conference on the Management of Patients with Long-Gap Esophageal Atresia: Perioperative, Surgical, and Long-Term Management (2021) | Consensus Statement | https://pubmed.ncbi.nlm.nih.gov/32668485/ |
ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Diagnostics, Preoperative, Operative, and Postoperative Management (2020) | Consensus Statement | https://pubmed.ncbi.nlm.nih.gov/31266084/ |
ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Follow-up and Framework (2020) | Consensus Statement | https://pubmed.ncbi.nlm.nih.gov/31777030/ |
ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) | Evidence Based Guideline | https://pmc.ncbi.nlm.nih.gov/articles/PMC7318734/ |
Translation: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - Ukrainian | Translated Document | https://www.ern-ernica.eu/_files/ugd/c8fbf6_a3c9a557ec0a4cb6b196076c99b16315.pdf |
Summary: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - English | Summary Document | https://www.ern-ernica.eu/_files/ugd/c8fbf6_fea59992c6104e97ba70c1b882a72cf3.pdf |
Summary: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - Finnish | Summary Document | https://www.ern-ernica.eu/_files/ugd/c8fbf6_d09f8eb6b1dc4d52bc866d4c652d1a13.pdf |
Summary: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - Swedish | Summary Document | https://www.ern-ernica.eu/_files/ugd/c8fbf6_e0c88ade3bb34d69a751739cb47191a0.pdf |
Guidelines and Consensus Statements endorsed by ERNICA
Title | Type of Document | Public Access Link | Disclaimer |
|---|---|---|---|
Diagnosis and management of congenital diaphragmatic hernia: a 2023 update from the Canadian Congenital Diaphragmatic Hernia Collaborative | Evidence Based Guideline | https://pubmed.ncbi.nlm.nih.gov/37879884/ | Unclear if patient values and preferences were considered |
Pediatric Gastroesophageal Reflux Clinical Practice Guidelines: Joint Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition | Evidence Based Guideline | https://pubmed.ncbi.nlm.nih.gov/29470322/ | Unclear if patient values and preferences were considered |
Care Recommendations for the Respiratory Complications
of Esophageal Atresia– Tracheoesophageal Fistula | Summary document | https://www.thieme-connect.de/products/ejournals/pdf/10.1055/a-2377-2834.pdf?articleLanguage=en | This document is endorsed by EAT, ERNICA, ERN-LUNG and INoEA. |