Filter on [TOPICS=ERN Specific Grant Agreements Year 2]

3rd Health Programme (2014-2020)
ERN-EYE [ERN-EYE]
Rare Eye Diseases (RED) represents a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while therapy options remain scares. ERN-EYE currently consists of 29 health...
Rare Eye Diseases (RED) represents a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while therapy options remain scares. ERN-EYE currently consists of 29 healthcare providers originating from 13 Member States and covers mainly genetically-based RED. The ERN-EYE network was connected to ultimately deliver the best possible healthcare to all European people with RED. To this end we have been implementing communication tools and coordinating the creation of a Clinical Platform Management System dedicated (CPMS) to RED: CPMS/ EyeClin. This digital hub is central to the ERN-EYE processes and actions. CPMS/EyeClin will be subdivided in 4 clinical departments: retinal RED, paediatric RED, neuro-ophthalmology RED, andanterior segment RED, comparable to the ones found in standard university hospitals. In addition, six transversal departments corresponding to genetic diagnosis, research activities, registries, guidelines, dissemination and outreach, medical training and teaching ensure cross-sectional collaboration and added value. We made a solid contribution within the 1st year towards our goals. At the end of the 1st year, the inventory phase is all-but-completed, resulting in the identification of gaps and production of tools. In the 2nd year, we will utilise this valuable information. To make the utility of CPMS/EyeClin a reality and to start Phase 2 (implementation), we will have as a major objective to launch the CPMS/EyeClin and make it functional for the RED patients by customising the CPMS to ophthalmic diseases and making it accessible to all members of ERN-EYE. We will also coordinate the launch of the ERN-EYE training education program and the basic RED registry on the CPMS/EyeClin platform. Lastly, we will raise awareness about collaborative projects and funding options and about the added value of research in the field of RED for stakeholders. Thus, the 2nd year of ERN-EYE marks the start of Phase 2.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
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
3rd Health Programme (2014-2020)
Gateway to Uncommon And Rare Diseases of the Heart [ERN GUARD-Heart]
ERN GUARD-Heart is an European Reference Network for rare or low prevalence complex diseases of the heart. In 2017, the Network brought together 24 expert HCPs from 12 EU Member States and established...
ERN GUARD-Heart is an European Reference Network for rare or low prevalence complex diseases of the heart. In 2017, the Network brought together 24 expert HCPs from 12 EU Member States and established an organisational structure that facilitates planning, organising, leading and controlling the efforts and resources of the ERN to achieve the goals and objectives as defined in its multiannual Work programme 2017-2021 for the Framework Partnership Agreement (FPA). To ensure a feasible and smooth deployment of the Network, in the initial phase, the Network covers 3 thematic areas (Familial electrical diseases, Familial cardiomyopathies, and Special electrophysiology conditions in children). In the 2nd year, pending official announcement of ERN extension rules, the Network aims to address 2 more areas (Congenital Heart Diseases and Other rare cardiac disease). The Network Members aim to provide better, safer, more efficient healthcare to all European patients with rare cardiac conditions on the basis of the best evidence available and (to foster transparency) through a global communication strategy. To achieve this purpose, the Network has defined 7 overarching goals in its multiannual Work programme for the FPA. Per goal, a number of specific objectives to be accomplished per year have been formulated. To achieve the formulated objectives for year 2 of the FPA, the Network will perform the following activities in the 2nd year: Network completion with 2 more thematic areas (see above), provision of networking services (meetings/conferences organisation, data gathering/sharing/dissemination, sharing of best practices), provision of training materials for health professionals), organisation of patient-physician meetings, and provision of safe and quality care to patients with rare cardiac diseases (by providing second opinion consultation service through CPMS, cross-border patient pathways, identification and development of PROMS, and development of internal benchmarks).

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018