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Table 6 Various communication strategies

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

  Dates Main purposes
RUDY JAPAN Facebook (public) [38] Since Dec. 2017 To disseminate information daily and externally. Post images and videos, share links.
RUDY JAPAN info (public) [39] Since Dec. 2017 To provide research information and update activities mainly for prospective and current participants, in addition to guide how to register and use RUDY JAPAN.
Newsletter (public) Oct. 2018, Mar. 2019 To periodically report progress in the development of the platform, as well as research results and messages from researchers and patients to participants.
Patient Network Forum (semi-private) Jan. 2019
Oct. 2019
To facilitate communication and networking among patients and between patients and doctors. The main topics include daily lives of patients and questions about clinical care.