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3rd Health Programme (2014-2020)
European Reference Network for Craniofacial Anomalies and ENT Disorders 2019-2021 [ERN CRANIO]
CRANIO - This proposal outlines the activities of ERN CRANIO for the years 2019, 2020 and 2021, which are line with the FPA. ERN CRANIO aims to support specialised centres across Europe to provide car...
CRANIO - This proposal outlines the activities of ERN CRANIO for the years 2019, 2020 and 2021, which are line with the FPA. ERN CRANIO aims to support specialised centres across Europe to provide care of the highest quality to patients with rare and/or complex craniofacial anomalies and Ear Nose and Throat (ENT) disorders. The network seeks to connect the most highly specialised centres in Europe so that professionals can share their knowledge and best practice. It also seeks to connect patient groups across the continent. It is hoped that the pooling of resources and expert information from both patients and professionals will facilitate access to high quality, multidisciplinary care for all European patients. The focus of the next 3 years will be; Expansion of the network across Europe (both healthcare providers and patient groups), development of disease-specific standards of care, initiation of a quality improvement cycle so that ERN-accepted standards of care can be monitored and refined, data collection and benchmarking via use of a registry, organisation of professional training, collaborative, multi-centre research and full implementation of the Clinical Patient Management System. Disseminating information on the network and its outputs to target groups will be crucial, in addition to evaluating progress.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources o...
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES [ERN-EuroBloodNet]
ERN-EuroBloodNet is conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-bord...
ERN-EuroBloodNet is conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-border health barriers existing for information, samples and patient mobility in Rare Hematological Diseases (RHD). Accordingly, the previously established state-of-the art on RHD needs allowed the implementation of concrete strategies for the next three years. The repository of experts and facilities will be expanded for a) obtaining accurate information on very rare haematological diseases (VRHD) and highly specialized interventions and b) increasing data robustness on members’ activity and clinical outcomes. Data exploitation will provide the evidence for elaborating Policy reports addressing needs at the national level while facilitating better use of resources. In some cases, this will lead to a cross-border issue, a legal policy report will be produced based on practical cases. Best practices will be promoted by the maintenance of the public database of international clinical practice guidelines. It will also include classification according to quality domains and assessment of implementation. Also, development of new External Quality Assessment Schemes for core laboratory tests will be promoted. Target-driven synergies will be established with educational bodies to address gaps in the most efficient manner. Different actions are contemplated channelled not only to increase multidisciplinary teams training but also to foster patients’ empowerment. In the field of inter-professional consultations, specific efforts on CPMS promotion among members will be dedicated. Epidemiological surveillance of VRHD will be facilitated by the development of GeoCodes including number of patients and diagnosis facilities. Lastly, actions will be taken to enhance members’ involvement on CTs for hardly accessible drugs for VRHD and to promote research collaborative projects.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources o...
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.
3rd Health Programme (2014-2020)
ERNICA work programme for 2019-2021 [ERNICA]
ERNICA – This European Reference network aims to support specialised centres across Europe to provide care of the highest quality to patients with rare, inherited and congenital anomalies. These dis...
ERNICA – This European Reference network aims to support specialised centres across Europe to provide care of the highest quality to patients with rare, inherited and congenital anomalies. These diseases are often low prevalence and complex. The network seeks to connect the most highly specialised centres in Europe so that professionals can share their knowledge and best practice. It also seeks to connect patient groups across the continent. It is hoped that the pooling of resources and expert information from both patients and professionals will facilitate access to high quality, multidisciplinary care for all European patients. The focus of the next 3 years will be; Expansion of the network across Europe (both healthcare providers and patient groups), development of disease-specific guidelines, consensus documents and ‘patient journeys’, data collection and benchmarking via use of a registry, organisation of training and development of training resources, multi-centre research and full implementation of the Clinical Patient Management System. ‘Fetal Medicine’ has been added as an additional work package and there are plans over the next 3 years for pre-natal guideline development and the establishment of an ERNICA pre-natal care network.
Start date: 01/03/2019 - End date: 28/02/2022
Keywords : [ Ernica ] [ Europe ] [ Rare Diseases ]

Call: Multiannual Grant Agreements for European Reference Networks
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources o...
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.