ERN eUROGEN, the European Reference Network for Rare and Complex Uro-Recto-Genital Diseases and Conditions, is proud to highlight the release of new clinical practice guidelines for children and adolescents affected by spinal dysraphism, with a strong emphasis on urological health.
Produced in equal partnership between the European Association of Urology, European Society for Paediatric Urology, ERN eUROGEN, ERN ITHACA, ERN ERKNet, and the International Federation for Spina Bifida and Hydrocephalus, these guidelines mark a significant step forward in standardising care, improving outcomes, and ensuring a holistic, multidisciplinary approach for patients.
Addressing Key Challenges in Urological Health
Children affected by spinal dysraphism often face significant urological complications, including neurogenic bladder and voiding dysfunction, which can lead to renal deterioration if not properly managed. The new guidelines aim to mitigate these risks by providing clear, evidence-based recommendations to ensure early intervention and long-term surveillance.
Key Highlights of the Guidelines:
✅ Early identification of urological complications, including neurogenic bladder and voiding dysfunction;
✅ Standardised evaluation protocols, including urodynamic studies, imaging, and urinary tract monitoring;
✅ Comprehensive management strategies to prevent renal deterioration and improve bladder function;
✅ Recommendations for long-term surveillance to optimise urological outcomes into adolescence and beyond.
Why These Guidelines Matter
Persons require care from a wide range of different services and medical specialists. In the absence of (accessible) multidisciplinary care, individuals affected by spinal dysraphisms and their families struggle to obtain and coordinate these different services and needs. The consequences of inadequate access to multidisciplinary care have a wider impact on the well-being of individuals with spinal dysraphisms and their families. Advancing health equity for persons with disabilities is, therefore, also a contributor to wider inclusion and participation in society.
Urological complications remain one of the most critical concerns for children with spinal dysraphism. Without timely and appropriate care, these children face an increased risk of kidney failure, incontinence, and diminished quality of life. By implementing these guidelines, healthcare professionals can ensure early diagnosis, consistent monitoring, and effective interventions, ultimately safeguarding kidney health and enhancing the overall well-being of affected children.
“This is an important milestone reflecting the principles ‘Nothing about us Without us’ promoting disability inclusion for health equity.”
Dr Sylvia Roozen – IFSBH Secretary General
“Developed through true collaboration, our latest guideline on spinal dysraphism in children and adolescents unites expertise from various stakeholders to set a new standard in patient care.”
Prof Dr Christian Radmayr and Prof Dr Rien Nijman – Chairmen, EAU Paediatric Guidelines Panel
Access the Full Guidelines
The full guidelines provide detailed protocols and expert recommendations to support clinicians, patients, and families navigating the complexities of spinal dysraphism.
📖 Read the full guidelines here
Reference to the Guidelines: Abrahamson et al., EAU – ESPU -ERN eUROGEN – ERN ITHACA – ERN ERKNet – IFSBH Guidelines on spinal dysraphism in children and adolescents. Clinical Guideline. EAU Guidelines Office, Arnhem,the Netherlands, 2024.
Next Steps
It is essential to recognise that multidisciplinary care is crucial for all age groups, not only for children. All too often, integrated multidisciplinary services are available exclusively to children, neglecting the critical transition from childhood and adolescence into adulthood. The working group established for these guidelines is now beginning discussions about guidelines for adults.
Join Us in Raising Awareness
At ERN eUROGEN, we are committed to improving outcomes for children with rare and complex urological conditions. We encourage clinicians, researchers, and patient advocates to share this important resource and support its implementation across Europe.
