This page provides country-specific information for families and children affected by intestinal failure within the ERNICA network. This page provides country-specific information for families and children affected by intestinal failure within the ERNICA network. Intestinal Failure: Country-Specific Information This page provides country-specific information for families and children affected by intestinal failure within the ERNICA network. A practical guide for families For each country, you will find details on available patient organisations and peer support, psychological and emotional support for patients and parents, educational support during long-term treatment, and information on healthcare funding and reimbursement, including parenteral nutrition (PN). Click on a country below to access detailed information. Information may vary by region within a country and is based on input from ERNICA centres. The Netherlands Italy Finland Spain Germany Sweden France Czech Republic

< Back Uppsala University Hospital Sweden This centre has expertise for ERNICA in: Gastroschisis Intestinal Failure Omphalocele Rare Inflammatory Bowel Diseases Short Bowel Syndrome Previous Next

ERNICA covers the following diseases within the working group for malformation of the diaphragm and abdominal wall defects. Malformations of the diaphragm and abdominal wall defects ERNICA covers the following diseases within the working group for malformation of the diaphragm and abdominal wall defects. Congenital diaphragmatic hernia CDH occurs when there is a hole in the diaphragm, which is the thin sheet of muscle separating the chest from the abdomen. Read More Read Less Omphalocele An omphalocele is a defect of the muscles of the abdominal wall that develops in the fetal stage. Read More Read Less Gastroschisis A rare abdominal wall malformation characterized by the bowel protruding from the fetal abdomen on the right lateral base of the umbilical cord, and without a covering sac. Read Less Read More Eventration of diaphragm Eventration of the diaphragm is the abnormal elevation of a portion or entire hemidiaphragm due to lack of muscle or nerve function while maintaining its anatomical attachments. Congenital hiatus hernia Congenital diaphragmatic hernia (CDH) Congenital diaphragmatic hernia (CDH) is a rare birth defect involving a 'rupture' (hernia) in the diaphragm. The diaphragm is a flat muscle that separates the abdominal cavity from the chest. It is formed during the tenth week of pregnancy. The diaphragm also helps with breathing. The hernia may cause part of the abdominal contents to enter the thoracic cavity. This leads to underdevelopment of the lungs (lung hypoplasia) and displacement of the heart to the other side of the body. The defect usually occurs on the left side (80%), and sometimes on the right. On the right side it does not always cause problems because the liver on the right side of the abdomen can close the defect. If part of the liver ends up in the thoracic cavity, it does cause symptoms. With a left-sided defect, the stomach, intestines or spleen can end up in the thoracic cavity. The defect in the diaphragm causes the contents of the abdomen to enter the thoracic cavity and to displace the lung. This leads to underdevelopment of the lung, with less branching of the respiratory tract and an abnormal formation of blood vessels. This can lead to high pressure in the blood vessels of the lungs (pulmonary hypertension). The degree of underdevelopment of the lungs and the severity of the high blood pressure in the lungs determine the course of this disease and its long-term consequences. The left-hand drawing shows the healthy situation in which the diaphragm is closed. In the middle drawing the diaphragm on the left has a rupture. The right-hand drawing shows that the intestines enter the thoracic cavity through the rupture, leaving the lungs with less space to develop. The life expectancy of children with congenital diaphragmatic depends largely on the location of the defect and the degree of development of the lungs. DIAGNOSTIC METHODS MANAGEMENT AND TREATMENT PROGNOSIS Considering prenatal and preoperative fatalities, mortality is 50-60%. Post-operative survival rate is 70-80%, up to 90% in certain institutions, particularly in non-syndromic CDH. Right-sided hernias seem to have a worse prognosis and may require more ECMO support. After surgical repair, pleural effusions and chronic respiratory tract disease are frequent, along with gastroesophageal reflux. Neurodevelopmental deficits are a risk following bouts of cerebral hypoxia. Neurosensorial deafness has been reported in a small proportion of patients. Termination of pregnancy may be offered when chromosomal aberrations and syndromes are present. Fetoscopic endoluminal tracheal occlusion (FETO) with a balloon, particularly for fetuses considered otherwise unviable, has yielded survival rates approaching 50%. Gestation should be prolonged until near term if possible; maternal corticosteroids have also been proposed. In newborns, pre- and post-ductal percutaneous oxygen saturation measurements may assess the pulmonary function. Spontaneous ventilation or high frequency, low pressure ventilation (<20-25 cm H2O), no relaxation, alkalinization and adoption of modest gasometric goals (pre-ductal saturation of 80-95%, PaO2 60 mm Hg, hypercapnia <60 mm Hg) are now the standard. Extra-corporeal membrane oxygenation (ECMO) has also been used. Inotropic drugs (eg: dobutamine, dopamine) may be used to treat cardiac anomalies. Surgical repair of the hernia, undertaken only after cardio-respiratory functions are stable, replaces viscera into the abdomen and closes the diaphragmatic defect; a prosthetic patch may be necessary to repair the defect. Some surgeons perform this operation by video-assisted thoracoscopy. Thoracic and abdominal X-rays locate herniated viscera. Blood gases and pH status, and other derived indexes, reflect the efficiency of gas exchange. Echocardiography of the heart is necessary to exclude associated malformations, to measure the right-to-left shunt and to estimate the severity of pulmonary hypertension. Omphalocele An omphalocele is a defect of the muscles of the abdominal wall that develops in the fetal stage. The intestines, liver and occasionally other organs are then located outside of the abdomen in a translucent membrane sac. The defect can be small, with only a small loop of intestines present outside the abdomen, or large, with most of the abdominal organs protruding from the abdomen (giant omphalocele). In severe cases surgical treatment is complicated by the abnormally small volume of the infant’s abdomen – as there was no need for expansion to accommodate the developing organs. Giant omphalocele is often associated with lung hypoplasia (sometimes severe) for which respiratory support is needed. Approximately 25–40% of infants with an omphalocele have other birth defects. These may include genetic problems (chromosomal abnormalities), congenital diaphragmatic hernia, and heart defects. A ’small’ type omphalocele (involving protrusion of a small portion of the intestine only) occurs in one of every 5,000 live births. A giant omphalocele (involving protrusion of the intestines, liver, and other organs) occurs in one of every 10,000 live births. DIAGNOSTIC METHODS MANAGEMENT AND TREATMENT PROGNOSIS Diagnosis is usually made before birth by ultrasound, and can be detect as early as 11 to 14 weeks gestation in tertiary level referral centers. Associated malformations can then be sought for and management of the infant can be timely prepared in specialized units. The prognosis for isolated omphalocele depends on the size of the defect; prognosis for small omphalocele is very good; however, giant omphalocele have a risk of pulmonary hypoplasia. Recent improvements to resuscitation and surgical techniques (through abdominal prostheses) have notably improved the prognosis of giant isolated omphaloceles, who present with some degree of pulmonary hypoplasia, over the last three decades. In syndromic cases, the main prognostic factor is the associated anomalies, especially cardiac defects. Management is surgical and aims to close the abdominal opening and return the protruding viscera to the abdomen. Various techniques can be applied when primary closure is not possible. Gastroschisis Gastroschisis is a rare condition that develops between weeks 8-11 of pregnancy. It consists of a defect in the abdominal wall to the right of the navel. The size of the defect may vary. Due to this defect, abdominal organs bulge outwards and lie freely in the uterus or on the abdomen after birth. The large and small bowel, spleen, stomach and sometimes the liver are involved. Because the intestines are outside the abdomen, they can become irritated and thickened. Experts from the ERNICA network have developed a European g uideline on the management of Gastroschisis is developed PDF DIAGNOSTIC METHODS MANAGEMENT AND TREATMENT PROGNOSIS Diagnosis is usually made before birth during prenatal ultrasound (US) in the first trimester, allowing the birth to be arranged in a specialized unit where surgery can be performed immediately and intensive neonatal support is available. Prognosis is linked to the functional quality of the intestinal loops, but is excellent in more than 90% of cases. Gastroschisis is a surgical emergency. Primary abdominal closure is not always possible and different techniques of delayed management may be resorted to. Neonatal nutritional support is paramount. Early delivery is often proposed when intestinal complication is suspected.

Guidelines For some rare or complex conditions, there are no clinical guidelines or consensus statements available at present. For some diseases, these are available but some may require review and revision. ERNICA seeks to endorse, develop or revise existing clinical guidelines and consensus documents to ensure clinical recommendations are made available to clinicians, patients and their families based on research of the highest quality. To safeguard the scientific integrity of our guidelines and consensus statements, ERNICA partners with the specialized professional organization Qualicura in their development. Within Qualicura, we closely collaborate with Willemijn, a methodologist, to ensure thoroughness and accuracy. For inquiries about the methodology employed in guideline development, please reach out to: w.irvine@erasmusmc.nl For questions regarding ERNICA guideline development in general, feel free to contact: ern-ernica@erasmusmc.nl Willemijn Irvine ERNICA Methodologist Guidelines and Consensus Statements produced by ERNICA Title Type of Document Public Access Link ERNICA evidence based guideline on omphalocele (2026) Evidence Based Guideline https://pmc.ncbi.nlm.nih.gov/articles/PMC13162432/ Updated ERNICA guidelines for the management of rectosigmoid Hirschsprung's disease (2025) Evidence Based Guideline https://onlinelibrary.wiley.com/doi/10.1002/jpn3.70442 European reference network for rare inherited congenital anomalies (ERNICA) evidence based guideline on the management of gastroschisis (2024) Evidence Based Guideline https://pubmed.ncbi.nlm.nih.gov/38347519/ European Reference Network for Inherited and Congenital Anomalies Evidence-Based Guideline on Surgical Aspects of Necrotizing Enterocolitis in Premature Neonates (2024) Evidence Based Guideline https://pmc.ncbi.nlm.nih.gov/articles/PMC12129410/ Summary: European Reference Network for Inherited and Congenital Anomalies Evidence-Based Guideline on Surgical Aspects of Necrotizing Enterocolitis in Premature Neonates (2024) Summary Document https://karger.com/neo/article-pdf/122/3/376/4302233/000542540.pdf Ernica Clinical Consensus Statements on Total Colonic and Intestinal Aganglionosis (2024) Consensus Statement https://www.sciencedirect.com/science/article/pii/S0022346824002951?via%3Dihub ERNICA Consensus Conference on the Management of Patients with Long-Gap Esophageal Atresia: Perioperative, Surgical, and Long-Term Management (2021) Consensus Statement https://pubmed.ncbi.nlm.nih.gov/32668485/ ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Diagnostics, Preoperative, Operative, and Postoperative Management (2020) Consensus Statement https://pubmed.ncbi.nlm.nih.gov/31266084/ ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Follow-up and Framework (2020) Consensus Statement https://pubmed.ncbi.nlm.nih.gov/31777030/ ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) Evidence Based Guideline https://pmc.ncbi.nlm.nih.gov/articles/PMC7318734/ Translation: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - Ukrainian Translated Document https://www.ern-ernica.eu/_files/ugd/c8fbf6_a3c9a557ec0a4cb6b196076c99b16315.pdf Summary: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - English Summary Document https://www.ern-ernica.eu/_files/ugd/c8fbf6_fea59992c6104e97ba70c1b882a72cf3.pdf Summary: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - Finnish Summary Document https://www.ern-ernica.eu/_files/ugd/c8fbf6_d09f8eb6b1dc4d52bc866d4c652d1a13.pdf Summary: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease (2020) - Swedish Summary Document https://www.ern-ernica.eu/_files/ugd/c8fbf6_e0c88ade3bb34d69a751739cb47191a0.pdf Guidelines and Consensus Statements endorsed by ERNICA Title Type of Document Public Access Link Disclaimer Diagnosis and management of congenital diaphragmatic hernia: a 2023 update from the Canadian Congenital Diaphragmatic Hernia Collaborative Evidence Based Guideline https://pubmed.ncbi.nlm.nih.gov/37879884/ Unclear if patient values and preferences were considered Pediatric Gastroesophageal Reflux Clinical Practice Guidelines: Joint Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition Evidence Based Guideline https://pubmed.ncbi.nlm.nih.gov/29470322/ Unclear if patient values and preferences were considered Care Recommendations for the Respiratory Complications of Esophageal Atresia– Tracheoesophageal Fistula Summary document https://www.thieme-connect.de/products/ejournals/pdf/10.1055/a-2377-2834.pdf?articleLanguage=en This document is endorsed by EAT, ERNICA, ERN-LUNG and INoEA.

Registry With the improved survival of newborns with rare inherited and congenital anomalies, clinical outcomes has become increasingly important. Since 2020, ERNICA has received continuous European Union funding through three consecutive grants (2020, 2022–2023, and 2023–2027). This ongoing investment supports quality improvement, research, and collaboration across Europe. ERNICA registries ERNICA has developed its own registry in collaboration with DICA , covering eight congenital conditions: Esophageal Atresia, Hirschsprung, Omphalocele, Gastroschisis, Congenital Diaphragmatic Hernia, Necrotizing Enterocolitis, Malrotation, and Anorectal Malformations. As of 2026, 39 European centres are connected to the EPSA. Please read more about the EPSA|ERNICA registry below. For intestinal failure, we collaborate with the existing International Intestinal Failure Registry (IIFR), a registry for paediatric intestinal failure patients hosted by the Transplantation Society (TTS) in Montreal, Canada. Please read more below. EPSA|ERNICA Registry The following diseases are currently included in the EPSA-ERNICA Registry: 1. Esophageal Atresia 2. Hirschsprung's Disease 3. Omphalocele 4. Gastroschisis 5. Congenital Diaphragmatic Hernia 6. Necrotizing enterocolitis 7. Malrotation 8. Anorectal Malformation (Registered exclusively by Dutch centers) BACKGROUND INFORMATION The European Pediatric Surgical Audit (EPSA) was developed by the Dutch Institute for Clinical Auditing in 2014 in collaboration with the Dutch Pediatric Surgical Association. Initially, it registered four diseases seen in Dutch newborn children: Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Esophageal Atresia, and Anorectal Malformation (registered exclusively by Dutch centers). In 2017, the audit was extended to include patients with Omphalocele and Gastroschisis. At the beginning of 2024 Malrotation was added, and in the beginning of 2025 Necrotizing Enterocolitis was added. Currently datasets are being developed for Intestinal Atresia and Colonic Atresia. This registry measures structural, process, and outcome indicators for these eight diseases. In the EPSA, data is entered anonymously and then processed by MRDM in accordance with GDPR regulations. Since then, ERNICA has obtained financial support from the European Commission to create a comprehensive registry for all European children with rare inherited diseases and congenital anomalies. This registry will build upon the EPSA, starting by expanding the registry to include more European hospitals. REGISTRY PARTNERS DICA (Dutch Institute for Clinical Auditing): https://www.dica.nl MRDM (Medical Research Data Management): https://mrdm.nl REGISTRY PURPOSE The primary aim of the EPSA | ERNICA Registry is to improve the quality of patient care. It does this by enabling healthcare providers to gain insights into their own outcomes as well as the anonymized overall outcomes of participating centers, using quality indicators selected by international experts in the field. Additionally, cumulative data in the EPSA can be used to conduct scientific research, for example, to compare treatments or identify certain risk factors for complications. Start registering Supporting documents Research About us Inclusion criteria All patients aged 18 years or younger who have undergone surgical intervention since the 1st of january 2014, for Esophageal Atresia, Hirschsprung disease, Omphalocele, Gastroschisis, Congenital Diaphragmatic Hernia, Necrotizing Enterocolitis, Malrotation and Anorectal Malformations (registered exclusively by Dutch centers). Apply to register: how to sign up your Medical Center: Do you have any questions, or are you interested in participating in the EPSA | ERNICA Registy? Please contact the audit managers: E-mail: EPSA@dica.nl More information is available on the DICA website. Already registering? You can access the Data Entry via the link below: Log in | DataEntry All documentation related to your outcome sets (such as the data dictionary and SNOMED mapping) is available here: Documents – MRDM Support Because the diseases registered in EPSA are rare, high-level evidence is limited. ERNICA therefore prioritizes research using EPSA data to strengthen evidence-based care. All proposals undergo thorough multi-level review to ensure careful, optimal use of data and robust scientific outcomes. As the EPSA | ERNICA Registry is still under development, not all data is yet sufficiently complete or validated. Following a verification project with all six Dutch pediatric surgical centers, Dutch data has been approved for scientific use. An international data verification project is currently underway. Once completed, data from participating international centers will also be made available for research. Below you can find the list of EPSA publications: Enhancing rare disease guideline development with real-world data: a method evaluation Willemijn Irvine, Linde Margriet van der Kamp, Olivia Spivack, Alexandra Benachi, Carmen Mesas Burgos, Roel Bakx, Charlotte Gaaster,land Rene Wijnen ERNICA Evidence-Based Guideline on Omphalocele Willemijn Irvine, Linde Margriet van der Kamp, Olivia Spivack, René Wijnen, Alberto Sgrò, Julia Brendel, Katrin Zahn, Lucas Matthyssens, Elisabet Gustafson, Henrik Røkkum, Lucia Migliazza, Rony Sfeir, Annika Mutanen, Udo Rolle, Anne Dariel, Marc Miserez, Ausra Lukosiute-Urboniene, Alexandre Vivanti, Nina Peters, Peter Conner, Eglė Machtejevienė, Francesca Russo, Ana Sanchez Torres, Alena Kokešová, Hans Jorgen Stensvold, Florian Kipfmueller, Mohamed Riadh Boukhris, Costanza Tognon, Simon Eaton, Iris den Uijl, Alexandra Benachi, Carmen Mesas Burgos Defining Excellence: The First Core Set of Quality Indicators for the European Paediatric Surgical Audit on Hirschsprung's Disease Care Daniel Rossi, Anna Löf Granström, Mikko Pakarinen, Kristin Bjørnland, Ivo de Blaauw, Mark Ellebæk, Francesco Fascetti Leon, Dirk-Jan Gloudemans, Alessio Pini Prato, Udo Rolle, Nicole Schwarzer, Merit Tabbers Alejandra Vilanova, Rene Wijnen, Cornelius E J Sloots, Tomas Wester; EPSA|ERNICA Registry Group and collaborative authors Core Indicator Set for Measuring Quality of Care in Necrotising Enterocolitis: A European Delphi Study Otis C van Varsseveld, Irene de Haro Jorge, Daniel Rossi, Marlinde van der Kamp, Mohamed Riadh Boukhris, Miriam Duci, Johannes W Duess, Simon Eaton, Elisabeth M W Kooi, Martin Lacher, Lucas E Matthyssens, Carmen Mesas Burgos, Marc Miserez, Lorenzo Norsa, Elena Palleri, Rony Sfeir, Marie Spruce, Marijn J Vermeulen, Jan B F Hulscher, Jordi Prat Ortells The European Pediatric Surgical Audit: improving quality of care in rare congenital malformations Nadine M. Teunissen, Daniel Rossi, Michel W. Wouters, Simon Eaton, Ernest L.W. van Heurn, Rene M.H. Wijnen, on behalf of the EPSA|ERNICA Registry Group Variability in the Reporting of Baseline Characteristics, Treatment, and Outcomes in Esophageal Atresia Publications: A Systematic Review. Nadine M. Teunissen, Julia Brendel, Ernest L.W. van Heurn, Benno M. Ure, Rene M.H. Wijnen, Simon Eaton on behalf of the EPSA|ERNICA Registry Group and the EA Quality of Care Initiative Selection of Quality Indicators to Evaluate Quality of Care for Patients with Esophageal Atresia Using a Delphi Method. Nadine M. Teunissen, Julia Brendel, Ernest L.W. van Heurn, Benno M. Ure, Rene M.H. Wijnen, Simon Eaton on behalf of the EPSA|ERNICA Registry Group and the EA Quality of Care Initiative Bridging the Gap: Reporting Baseline Characteristics, Process and Outcome Parameters in Hirschsprung's Disease. A Systematic Review. Daniel Rossi, Anna Löf Granström, Nadine M. Teunissen, René M.H. Wijnen, Tomas Wester, Cornelius E.J. Sloots Prevalence and early surgical outcome of congenital diaphragmatic hernia in the Netherlands: a population based cohort study from the European Pediatric Surgical Audit Nadine M. Teunissen, Horst Daniels, J. Marco Schnater, Ivo de Blaauw, Rene M.H. Wijnen Clinical Audit Board Prof. dr. R.M.H. Wijnen, Erasmus MC, Rotterdam, chair Prof. Dr. L.W.E. van Heurn, Maastricht UMC+, Maastricht, chair Dhr. dr. R.R. Gorter, Amsterdam UMC, Amsterdam, interim chair Dr. S. Eaton, UCL Great Ormond Children's Hospital, Londen, member Prof. dr. M. Pakarinen, Helsinki University Hospital, Helsinki, member Prof. dr. J.B.F. Hulscher, University Medical Center Groningen, Groningen, member Prof. dr. T. Wester, Karolinska Institutet, Stockholm, member Dr. K. Toczewski, Wroclaw University Hospital, member Clinical Audit Managers EPSA | ERNICA Registry Marlinde van der Kamp, MSc, Erasmus MC | DICA Alice Beck, LLM, Erasmus MC | DICA Noa Ouwehand, MSc, Erasmus MC | DICA Contact For questions about organisation, research or content of the registry, contact EPSA@dica.nl . 1. Esophageal Atresia 2. Hirschsprung's Disease 3. Omphalocele 4. Gastroschisis 5. Congenital Diaphragmatic Hernia 6. Necrotizing enterocolitis 7. Malrotation 8. Anorectal Malformation (Registered exclusively by Dutch centers) Standard documentation SNOMED mapping SNOMED-Mapping_EPSA Snomed mapping is used as a common language between different users who work with other terminologies, coding systems, or classifications. Data dictionary EPSA datadictionary 2026 A data dictionary is a document that describes all the variables used in the datasets. It lists each variable by its variable name and explains what it represents, how it should be interpreted, and how the data is structured CRF document EPSA crf file 2026 A CRF (Case Report Form) is a document that shows exactly which data are collected in a registry Mission To gather comparable, comprehensive and complete pre-, peri- and postnatal data to improve the quality of care. The IFFR Registry BACKGROUND INFORMATION Intestinal failure is a rare disease, and research has historically been limited by small patient numbers at individual centers. To address this, the International Intestinal Rehabilitation and Transplant Association (IIRTA) established the International Intestinal Failure Registry (IIFR), a dedicated global platform to track outcomes and trends in intestinal failure. A successful pilot phase involving twelve centers ran from 2018–2020. Since 2021, the registry has been actively collecting data from contributing centers worldwide. For more information, visit the IIFR website REGISTRY MISSION The mission of the International Intestinal Failure Registry (IIFR) is to provide the international intestine rehabilitation and transplant community with accurate data on the outcomes and course of intestinal failure to support research, quality improvement, and policy development. GENTLEMEN's AGREEMENT ERNICA HCPs contributing to the IIFR registry participate under a gentlemen’s agreement, which fosters mutual understanding, cooperation, and progress. This document outlines the terms for: Participation in the IIFR registry Contributions to publications Involvement in the IIFR scientific committee Download

< Back Tartu University Hospital  Affiliated partner ERNICA Previous Next

< Back ERNICA-ERN Lung joint summary on respiratory complications of EA-TEF Jul 29, 2025 Care recommendations for the respiratory complications of esophageal atresia-tracheoesophageal fistula This summary is based on the care recommendations for the respiratory complications of esophageal atresia-tracheoesophageal fistula (EA-TEF) by Koumbourlis et al. and integrates recent statements and guidelines from the European Respiratory Society, along with consensus recommendations from the working groups of INoEA, ERNICA, and ERN-LUNG. The document is endorsed by the Esophageal Atresia Global Support Groups (EAT), the European Reference Network for rare Inherited and Congenital Anomalies (ERNICA), the European Reference Network for rare respiratory diseases (ERN-LUNG), and the International Network of Esophageal Atresia (INoEA). ERNICA-ERN Lung Recommendations .pdf Download PDF • 116KB Previous Next

For Clinicians This page contains information that may be of importance to clinicians in the field of rare diseases or any other field of healthcare. ERNICA works on different activities where experts from the network participate or contribute to. What We Do Guidelines This area of work refers to activities related to the development, revision and implementation of care standards Read More Training and Capacity Building Find more information here about ERNICA's training initiatives. Read More Clinical Management System The Clinical Patient Management System is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually. Read More Research ERNICA aims to facilitate and foster research initiatives across Europe and stimulate multi-centre collaboration. Read More

CPMS The Clinical Patient Management System (CPMS) is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients with rare, low prevalence and complex diseases. Regular panel discussions take place for esophageal atresia, intestinal failure, hirschsprung's disease, abdominal wall malformations and Congenital Diaphragmatic Hernia (CDH) cases. The Clinical Patient Management System (CPMS) is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients with rare, low prevalence and complex diseases. ERNICA member hospitals and affiliated partners have access to this platform. Centres not involved in ERNICA may be granted guest access to the CPMS if appropriate and on request. We encourage ERNICA members to register on the CPMS and make active use of it. Rebecca Pulvirenti (ERNICA's CPMS officer) can support with registration, patient upload and use of the CPMS. She is also able to provide login credentials to the CPMS training environment if requested. Rebecca can be contacted on cpmshelpdesk@ernica.ern-net.eu (Note; no patient information is to be emailed). Prior to case upload, a CPMS patient consent form must be completed and stored locally. These consent forms are available in every European language and are downloadable below. Bulgarian Croatian Czech Danish Dutch English Estonian Finnish French German Greek Hungarian Italian Latvian Lithuania Irish Maltese Norwegian Polish Portugese Romanian Slovak Slovenian Spanish Swedish

ERNICA Posters ERNICA actively shares its work at conferences and scientific meetings through the presentation of posters. These contributions help disseminate the results of ERNICA projects, increase visibility of the network, and showcase its initiatives to a wider audience. By engaging with the clinical and research community in this way, ERNICA strengthens collaboration, promotes knowledge exchange, and raises awareness of its mission and impact. Please click on the posters below to enlarge them. For more information about a specific poster, please reach out to us by writing an email to: ern-ernica@erasmusmc.nl . EUPSA, Vienna, 20-23 May 2026

< Back University Hospital Graz Affiliated partner ERNICA Previous Next

< Back Rigshospitalet Copenhagen Denmark This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Previous Next