Genetic Disease / Projects

3rd Health Programme (2014-2020)
ERN-RARE-LIVER: The European Reference Network in Rare Liver Disease [ERN-RARE-LIVER]
This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological diseases. Liver disease is a major and growing problem in the European populatio...
This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological diseases. Liver disease is a major and growing problem in the European population. The expansion in clinical need because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack of expertise. The challenge is particularly acute in rare liver disease; a setting in which Europe leads the world in terms of academic innovation. The ERN model is particularly attractive in the setting of rare liver disease as it will foster the development of ‘virtual critical mass’ across European centres with benefits in terms of clinical care deliver, teaching and training and research capacity. Supported by the relevant professional societies (The European Association for the Study of the Liver EASL) and the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), the community of our field. Covering all ranges, from paediatric to adult through transitional care, ERN-RARE-LIVER has 3 themes reflecting important disease groupings (Autoimmune Liver Disease; Metabolic, Biliary Atresia and Related Disease; Structural Liver Disease) with a coherent plant to increase both our disease scope and geographical coverage. We will improve patient care directly through our work on guideline optimisation, care pathway development and the implementation of a model of “TELE-BOARDS” with multi-centre discussion of complex and challenging cases. We will also facilitate improvement in diagnostics capacity through development of quality assurance programmes in serology and histopathology, and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: Genetic Disease
3rd Health Programme (2014-2020)
ERN-RARE-LIVER: The European Reference Network in Rare Liver Disease [ERN-RARE-LIVER]
This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological
diseases. Liver disease is a major and growing problem in the European population...
This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological
diseases. Liver disease is a major and growing problem in the European population. The expansion in clinical need
because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack
of expertise. The challenge is particularly acute in rare liver disease; a setting in which Europe leads the world in terms of
academic innovation. The ERN model is particularly attractive in the setting of rare liver disease as it will foster the
development of ‘virtual critical mass’ across European centres with benefits in terms of clinical care deliver, teaching and
training and research capacity. We are also supported by the relevant professional societies, the European Association for the Study of
the Liver (EASL) and the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), who are the
communities of our field. Covering all ranges, from paediatric to adult through transitional care, ERN-RARE-LIVER has 3
themes reflecting important disease groupings (Autoimmune Liver Disease; Metabolic, Biliary Atresia and Related Disease;
Structural Liver Disease) with a coherent plant to increase both our disease scope and geographical coverage. We will
improve patient care directly through our work on guideline optimisation, care pathway development and the implementation
of a model of “TELE-BOARDS” with multi-centre discussion of complex and challenging cases. We will also facilitate
improvement in diagnostics capacity through development of quality assurance programmes in serology and histopathology,
and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will
enhance care delivery through increase in the trained workforce and knowledge respectively.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: Genetic Disease
3rd Health Programme (2014-2020)
ERN RARE LIVER: The European Reference Network in Rare Liver Disease [ERN RARE LIVER]
This proposal supports the European Reference Network (ERN) in rare hepatological disease. Liver disease is a major and growing problem in the European population. The expansion in clinical need becau...
This proposal supports the European Reference Network (ERN) in rare hepatological disease. Liver disease is a major and growing problem in the European population. The expansion in clinical need because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack of expertise. The ERN model is attractive for rare liver disease as it fosters the development of "virtual critical mass" across European centers with benefits in terms of clinical care delivery, teaching, training and research capacity. The ERN covers both adult and paediatric patents in the disease groupings (Autoimmune Liver Disease; Metabolic Biliary Atresia and related diseases; Structural Liver Disease) with a coherent plan to increase both disease scope and geographical coverage. Patient care will be improved through work on guidelines, care pathway development and the use of the Clinical Patient Management System for multi-centre discussion of complex cases. We also facilitate improvement in diagnostics capacity through development of quality assurance programmes in serology and hisopathology and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: Genetic Disease