The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

BACKGROUND: The role of patients in medical research is changing, as more emphasis is being placed on patient involvement, and patient reported outcomes are increasingly contributing to clinical decision-making. Information and communication technology provides new opportunities for patients to acti...

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Detalles Bibliográficos
Autores principales: Hamakawa, Nao, Kogetsu, Atsushi, Isono, Moeko, Yamasaki, Chisato, Manabe, Shirou, Takeda, Toshihiro, Iwamoto, Kazumasa, Kubota, Tomoya, Barrett, Joe, Gray, Nathanael, Turner, Alison, Teare, Harriet, Imamura, Yukie, Yamamoto, Beverley Anne, Kaye, Jane, Hide, Michihiro, Takahashi, Masanori P., Matsumura, Yasushi, Javaid, Muhammad Kassim, Kato, Kazuto
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Research Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7852111/
https://www.ncbi.nlm.nih.gov/pubmed/33526087
http://dx.doi.org/10.1186/s40900-021-00253-6

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