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ERNICA work programme for 2019-2021 [ERNICA] [847139] - Operating Grant
Project abstract

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
Duration: 36 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 600 000,00