Literature DB >> 32570529

Implementation of EXABO - An Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases.

Désirée Walther1, Olivia Steinmann2, Thomas O F Wagner2, Holger Storf1.   

Abstract

Rare conditions can make it difficult for physicians and healthcare providers to find the right answers and treatment for patients suffering rare diseases. The number of experts specializing in rare diseases in Europe is low. In order to ensure qualified diagnosis, treatment and care for these patients, the European Commission has founded the European Reference Networks (ERNs), which are virtual networks that include healthcare providers across Europe aiming to provide better care for patients across Europe. The European Reference Network LUNG (ERN-LUNG) has been established for patients with rare respiratory diseases seeking care and advice on all aspects of rare respiratory diseases. In the context of ERN-LUNG, the Expert Advisory Board (EXABO) was implemented. EXABO is a pan-European internet platform based on a question-answering system to support answering questions regarding all areas of rare respiratory diseases. This paper gives a brief overview of the first steps taken regarding the implementation of the EXABO platform, the challenges faced and the lessons that have been learned.

Entities:  

Keywords:  ERN-LUNG; Expert Advisory Board; Rare Diseases; rare respiratory diseases

Year:  2020        PMID: 32570529     DOI: 10.3233/SHTI200309

Source DB:  PubMed          Journal:  Stud Health Technol Inform        ISSN: 0926-9630


  1 in total

Review 1.  [Healthcare networks for people with rare diseases: integrating data and expertise].

Authors:  Holm Graessner; Holger Storf; Franz Schaefer
Journal:  Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz       Date:  2022-09-27       Impact factor: 1.595

  1 in total

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