Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

BACKGROUND: Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all...

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Detalles Bibliográficos
Autores principales: Babac, Ana, Litzkendorf, Svenja, Schmidt, Katharina, Pauer, Frédéric, Damm, Kathrin, Frank, Martin, Graf von der Schulenburg, Johann-Matthias
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2017
Materias:
Original Paper
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5715203/
https://www.ncbi.nlm.nih.gov/pubmed/29158209
http://dx.doi.org/10.2196/ijmr.7352

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5715203/
https://www.ncbi.nlm.nih.gov/pubmed/29158209
http://dx.doi.org/10.2196/ijmr.7352

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