ERN-EYE is a highly specialized network dedicated to Rare Eye Diseases, the leading cause of visual impairment and blindness in children and young adults in Europe. Launched in March 2017 concomitantly with 23 other European Reference Networks (ERNs), ERN-EYE is constituted by 29 Healthcare Providers (HCPs) in 13 European Member States. More information on www.ern-eye.eu
ERNs, European Reference Networks, are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in March 2017 involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU countries. 24 ERNs are working on a range of thematic issues including rare eye diseases, childhood cancer and immunodeficiency.
RED, Rare Eye Diseases, encompasses more than 900 diseases identified in the Orphanet database. In the ERN-EYE network, members are organized in four major Clinical Working Groups: Retinal diseases RED, Neuro-ophthalmology RED, Paediatric RED and anterior segment RED.
HCP, Healthcare Provider, is an individual health professional or a health facility organization licensed to provide health care diagnosis and treatment services including medication, surgery and medical devices.
GDPR, General Data Protection Regulation (EU) 2016/679, is a regulation in EU law on data protection and privacy in the European Union (EU) and the European Economic Area (EEA). It also addresses the transfer of personal data outside the EU and EEA areas. The GDPR aims primarily to give control to individuals over their personal data and to simplify the regulatory environment for international business by unifying the regulation within the EU.
ERDRI, European Rare Disease Registry Infrastructure, renders rare disease registries’ data searchable and findable. This is achieved through the provision of following components: European Directory of Registries (ERDRI.dor), Central Metadata Repository (ERDRI.mdr) and Pseudonymisation Tool (EUPID). ERDRI supports existing registries in view of their interoperability and the creation of new registries. More information : https://eu-rd-platform.jrc.ec.europa.eu/erdri-description_en
Findable, Accessible, Interoperable and Reusable. In 2016, the “FAIR Guiding Principles for scientific data management and stewardship” were published in Scientific Data. The authors intended to provide guidelines to improve the findability, accessibility, interoperability, and reuse of digital assets. The principles emphasise machine-actionability (i.e., the capacity of computational systems to find, access, interoperate, and reuse data with none or minimal human intervention) because humans increasingly rely on computational support to deal with data as a result of the increase in volume, complexity, and creation speed of data. More information : https://www.nature.com/articles/sdata201618
ERN EYE addresses these conditions in four thematic groups: