ArticleOrphanet journal of rare diseases2019
Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER.
Article in Orphanet journal of rare diseases, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 18 citations in OpenAlex.
- Outcome of Children with Transjugular Intrahepatic Portosystemic Shunt: A Meta-Analysis of Individual Patient Data.Cardiovascular and interventional radiology · 2023Pooled it
- Genetic testing in liver diseases: Clinical applications.JHEP reports : innovation in hepatology · 2026Review
- European Reference Networks as core health structures where referring genetic newborn screening positive infants: an innovative operational research framework.Frontiers in public health · 2026Article
- The UK National Appeals Panel Safely Extends Access to Liver Transplantation for Candidates Beyond Standard Listing Criteria.Transplant international : official journal of the European Society for Organ Transplantation · 2026Article
- Does Gamma-Glutamyl Transpeptidase Serum Level Play a Role as a Prognostic Marker in Biliary Atresia, an Immune-Mediated Cholangiopathy in Children?Journal of clinical medicine · 2025Article
- Strengthening collaboration within Europe: biliary atresia and the rise of the European Reference Networks.World journal of pediatric surgery · 2025Review
- Confidence in treatment is contributing to quality of life in autoimmune liver diseases. The results of ERN RARE-LIVER online survey.Liver international : official journal of the International Association for the Study of the Liver · 2023Article
- Incidence, Impact and Treatment of Ongoing CMV Infection in Patients with Biliary Atresia in Four European Centres.Journal of clinical medicine · 2022Article
- Predictors for incomplete response to ursodeoxycholic acid in primary biliary cholangitis. Data from a national registry of liver disease.United European gastroenterology journal · 2021Observational
- [European Reference Network for Rare Hepatological Diseases (ERN RARE-LIVER)].Der Internist · 2021Review
- Clinical profiles and diagnostic challenges in 1158 children with rare hepatobiliary disorders.Pediatric research · 2021Article
- Primary Sclerosing Cholangitis: Burden of Disease and Mortality Using Data from the National Rare Diseases Registry in Italy.International journal of environmental research and public health · 2020Article
Corrections and comments
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Authors and funding
7 authors at 4 institutions in 3 countries.
Funding
Abstract
The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.