Literature DB >> 28275837

[European Reference Networks : Consequences for healthcare in Germany].

Holm Graessner1, Franz Schäfer2, Maurizio Scarpa3, Thomas O F Wagner4.   

Abstract

Starting in 2017, European Reference Networks (ERNs) for rare disease patients will be established in the European Union. ERNs will pool expertise in clinical centres and will establish cross-border exchange mechanisms in order to facilitate access to diagnosis and care. The integration of ERNs in the German healthcare system will pose a significant challenge. The main issues include: (i) competition between national and European interests in the conflict of national responsibility and intended cross-border availability of healthcare services, (ii) the lack of a funding concept, and (iii) the establishment of ERNs in EU member states in which implementation of national action plans for people with rare diseases is lagging behind. The lower implementation pace of the centre model that is part of the German action plan and the higher level of detail of the ERNs in terms of services and activities provided will likely lead to an appreciation that achieved patient benefits are attributed to ERNs.

Entities:  

Keywords:  European Reference Networks; Healthcare; National Action Plan for Rare Disease Patients; Rare diseases

Mesh:

Year:  2017        PMID: 28275837     DOI: 10.1007/s00103-017-2533-x

Source DB:  PubMed          Journal:  Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz        ISSN: 1436-9990            Impact factor:   1.513


  2 in total

1.  Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE).

Authors:  Ute Thyen; Till Ittermann; Steffen Flessa; Holger Muehlan; Wiebke Birnbaum; Marion Rapp; Louise Marshall; Maria Szarras-Capnik; Claire Bouvattier; Baudewijntje P C Kreukels; Anna Nordenstroem; Robert Roehle; Birgit Koehler
Journal:  BMC Health Serv Res       Date:  2018-07-05       Impact factor: 2.655

Review 2.  Assessing the health-related management of people with differences of sex development.

Authors:  Martina Jürgensen; Marion Rapp; Ulla Döhnert; Fabian-Simon Frielitz; Faisal Ahmed; Martine Cools; Ute Thyen; Olaf Hiort
Journal:  Endocrine       Date:  2021-01-30       Impact factor: 3.633

  2 in total

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