Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

BACKGROUND: Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In...

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Detalhes bibliográficos
Publicado no:JMIR Res Protoc
Main Authors: Litzkendorf, Svenja, Hartz, Tobias, Göbel, Jens, Storf, Holger, Pauer, Frédéric, Babac, Ana, Lührs, Verena, Bruckner-Tuderman, Leena, Schauer, Franziska, Schmidtke, Jörg, Biehl, Lisa, Wagner, TOF, Graf von der Schulenburg, J-Matthias, Frank, Martin
Formato: Artigo
Idioma:Inglês
Publicado em: JMIR Publications 2018
Assuntos:
Protocol
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC5970281/
https://ncbi.nlm.nih.gov/pubmed/29752252
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.2196/resprot.7425
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