For some rare or complex conditions, no clinical guidelines or consensus statements have been available. For some diseases, these are available, but some may require review and revision. ERN eUROGEN seeks to develop, adapt, and endorse Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) to ensure that clinical recommendations, based on the highest-quality research, are available to support the care of rare uro-recto-genital diseases and complex conditions. These guidelines are aimed primarily at frontline urologists, surgeons, and patients to support shared decision-making and more individualised, patient-centered care. For patient-friendly resources, see our Patient Information page. ERN eUROGEN is currently working on translating and adapting a Dutch Clinical Practice Guideline (CPG) on the diagnosis and treatment of adrenal tumours. When complete, it will be available here. 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] ERN eUROGEN and the DGU are currently working on translating and endorsing a Clinical Practice Guideline (CPG) on bladder exstrophy/epispadias complex. When complete, it will be available here. ERN eUROGEN is working on developing a Clinical Practice Guideline (CPG) on inflammatory bladder diseases. When complete, it will be available here. ERN eUROGEN is working on developing a Clinical Decision Support Tool (CDST) for megaureters. When complete, it will be available here. ERN eUROGEN is working on developing a Clinical Decision Support Tool (CDST) for posterior urethral valves. When complete, it will be available here. 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 (CPG). 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. Transition Care for Individuals with Rare Uro-Recto-Genital Conditions: A Lifelong, Patient-Centered Approach sets out how the transition from paediatric to adult healthcare should be organised for people with rare uro-recto-genital conditions. It covers the principles underpinning good transition care, including individualised transition plans, a named transition coordinator for every patient, and a comprehensive transition summary at the point of transfer, as well as seven formal recommendations for healthcare providers and systems. Developed by the ERN eUROGEN Transition & Lifelong Care Working Group, chaired by Raimund Stein, the document brings together clinicians and patient representatives with expertise or lived experience across the network’s paediatric workstream. The guidance also includes a condition-by-condition breakdown across the workstream’s expertise areas, from Differences of Sex Development and Bladder Exstrophy–Epispadias Complex through to Anorectal Malformations, setting out the core specialists who should definitely be involved in each patient’s multidisciplinary team, along with recommended and optional roles. It is intended for clinicians and multidisciplinary teams, healthcare providers reviewing their transition pathways, patient advocacy groups, and national health systems and policymakers. ERN eUROGEN and the DGU are currently working on developing a Clinical Practice Guideline (CPG) on urovaginal fistulas (vesico vaginal, urethrovaginal, and ureterovaginal fistulas). When complete, it will be available here. ERN eUROGEN is working on developing a Clinical Decision Support Tool (CDST) for vaginal malformations. When complete, it will be available here. ➡️ EAU Sexual and Reproductive Health Guidelines (including Male Infertility) 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 (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 upon publication. In terms of methodology, 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 ERN Guidelines 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) To further safeguard the scientific integrity of CPGs and CDSTs, ERN eUROGEN often works with the specialised professional organisation Qualicura. Within Qualicura, we closely collaborate with methodologists to ensure thoroughness and accuracy. 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 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: 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 ERN Guidelines 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)Clinical Practice Guidelines and Clinical Decision Support Tools
CPGs/CDSTs Produced by ERN eUROGEN
Adrenal Tumours (CPG by ERN eUROGEN)
Anorectal Malformations (CPG by ERN eUROGEN)
Bladder Exstrophy/Epispadias Complex (CPG by ERN eUROGEN & DGU)
Inflammatory Bladder Diseases (CPG by ERN eUROGEN)
Megaureters (CDST by ERN eUROGEN)
Posterior Urethral Valves (CDST by ERN eUROGEN)
Spinal Dysraphism in Children and Adolescents (CPG by EAU, ESPU, ERN eUROGEN, ERN ITHACA, ERN ERKNet, IFSBH)
Transition Care for Individuals with Rare Uro-Recto-Genital Conditions: A Lifelong, Patient-Centered Approach
Urovaginal Fistulas (CPG by ERN eUROGEN & DGU)
Vaginal Malformations (CDST by ERN eUROGEN)
Recommended Guidelines by Other Organisations
Penile Cancer (EAU-ASCO)
EAU-ASCO Penile Cancer Guidelines (involving ERN eUROGEN clinical experts and ePAG members) Penile Cancer: EAU-ASCO Collaborative Guidelines Update Q and ASexual and Reproductive Health (EAU)
General Information
ERN eUROGEN Guideline Development
Patient Involvement in ERN Guidelines
ERN Guidelines Training
ERN Guidelines Methodological Handbooks
Guidelines
