Guidelines

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]

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 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]

Guidelines are produced by expert panels of clinicians and patient representatives and follow recognised ERN methodology to ensure scientific quality and patient-centred care.

The ERN eUROGEN Guidelines Expert Panel is an overarching group that commissions guideline subgroups and oversees guideline development. It is formed of representatives from our healthcare providers, European Patient Advocacy Group, and Supporting Partners, helping to avoid duplicating work already underway elsewhere and to make the best use of limited expertise.

Development is also closely aligned with the European Association of Urology’s (EAU) Guidelines Office; EAU guidelines are endorsed by national urological and medical societies worldwide, so guidelines co-developed with ERN eUROGEN stand a strong chance of reaching that same wide network once published.

Patient representatives are included in guideline development from the outset, as co-authors rather than as an afterthought,

EURORDIS has produced an ePAG guide on involving patients in CPG and CDST development:

➡️ Patient Involvement in Clinical Practice Guidelines and Other Clinical Decision Support Tools

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)

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.