Guidelines

Clinical Practice Guidelines and Clinical Decision Support Tools

ERN eUROGEN develops, adapts, and endorses clinical practice guidelines (CPGs) and clinical decision support tools (CDSTs) to support the care of rare urogenital conditions. These are produced with European experts and patient representatives, following recognised EU methodology to ensure scientific quality and patient‑centred care.

For patient-friendly resources, see our Patient Information page.

Guidelines Produced by ERN eUROGEN

Anorectal Malformations (CPG by ERN eUROGEN)

The ERN eUROGEN Clinical Practice Guideline (CPG) on anorectal malformations (ARM) is an adaptation of a Dutch Quality Standard, produced using the ADAPTE methodology and systematic literature reviews. Our expert working group—including patient representatives—reviewed and refined the recommendations to ensure they are evidence‑informed and suitable for the European context.

This comprehensive guideline covers the full care pathway: diagnosis, treatment, lifelong follow‑up, organisation of care, collaboration between healthcare providers, and transition to adult care. It replaces the two earlier parts (diagnosis/treatment and follow‑up/transition).

➡️ Download the Clinical Practice Guideline on Anorectal Malformation (Combined, August 2025) [PDF]

Spinal Dysraphism in Children and Adolescents (CPG by EAU, ESPU, ERN eUROGEN, ERN ITHACA, ERN ERKNet, IFSBH)

The European Association of UrologyEuropean Society for Paediatric Urology, ERN eUROGEN, ERN ITHACAERN ERKNet, and the International Federation for Spina Bifida and Hydrocephalus formed a working group to standardise the approach to care for paediatric patients with spinal dysraphism through the development of a Clinical Practice Guideline.

The EAU Guidelines Office and EAU Paediatric Guidelines Panel led the process, ensuring the methodology met the standards set by the European Commission (as assessed by the Aragon Health Sciences Institute, IACS). The Memorandum of Understanding is available, and the methodology is included in the appendices.

➡️ Download the Clinical Practice Guidelines for Spinal Dysraphism in Children & Adolescents (February 2025) [PDF]

General Information

ERN eUROGEN Guidelines Expert Panel

We have established an ERN eUROGEN Guidelines Expert Panel – an overarching group formed of representatives from our healthcare providers, ERN Patient Advocacy Group, and Supporting Partners. This panel commissions guideline subgroups and oversees guideline development.

ERN Guidelines Methodological Handbooks

The European Commission funded a project to support ERNs and their healthcare providers in developing, appraising, and implementing clinical practice guidelines (CPGs) and clinical decision support tools (CDSTs). The project produced methodological handbooks based on an extensive literature review and consultation process, aligned with international “gold standards.”

A 2024 review confirmed the methodology is of very good quality and provides a sound basis for developing ERN guidelines.

➡️ Access the ERN Guidelines Methodological Handbooks (European Commission website)

ERN Guidelines Training

The EU Academy hosts a training module on Development of Clinical Practice Guidelines within the ERN Guideline Programme. It supports healthcare professionals, CPG developers, and expert panel members to develop, appraise, and implement ERN CPGs and CDSTs effectively.

To access the module, you’ll need an EU Login account:

  • Go to EU Login.
  • Create an account and complete verification (two‑factor authentication).
  • Log in to the EU Academy and access the training module.