A new pan-European study examining the management of Hirschsprung’s disease (HSCR) has been published in Acta Paediatrica, offering valuable insights into variations in care pathways and treatment approaches. Representatives from HSCR expert centres within ERNICA and ERN eUROGEN contributed to this important research, with most participating healthcare providers affiliated with centres in these networks.
📖 Read the full study here: Defining Excellence: The First Core Set of Quality Indicators for the European Paediatric Surgical Audit on Hirschsprung’s Disease Care
Key Findings
- Variability in diagnostic strategies, including differences in biopsy techniques and imaging use.
- Diverse surgical approaches, with differences in preferred techniques and timing of interventions.
- The importance of multidisciplinary follow-up, highlighting the role of paediatric surgery, gastroenterology, and other specialties in long-term patient care.
- The need for greater harmonisation of care standards across Europe.
Importance for ERN eUROGEN and ERNICA
As European Reference Networks dedicated to rare urogenital and colorectal conditions, ERN eUROGEN and ERNICA play a vital role in facilitating collaboration and improving the quality of care for HSCR patients. This study is a testament to the collaborative power of ERNs, demonstrating how shared expertise can lead to a deeper understanding of rare disease management and underscoring the necessity of standardised protocols and best-practice guidelines, ensuring all patients receive optimal treatment, regardless of where they are treated.
Next Steps
The findings provide a strong foundation for future initiatives to reduce disparities in HSCR management. ERN eUROGEN and ERNICA will continue working with experts across Europe to develop evidence-based recommendations that support consistent, high-quality care for children with HSCR.
