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Table 5 Changes in research design and management made in response to the Steering Committee

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

No. Topic Patient comments Status
A: response completed
B: in progress
C: under consideration
D: unchangeable
1 Study benefit The benefits of participation in research are unclear. A
2 Study purpose The purpose of the study is unclear. A
3 Research progress The progress of the research should be disseminated. A
4 Patient needs An opportunity to connect with other patients and doctors and better understand diseases is important for patients. A
6 Registration process The registration pathway is time-consuming. C
Return envelope for sending the consent form should be attached when participants are requested to mail a consent sheet. A
Explanation of the consent sheet format is unclear. A
7 Participant reminders The provisional registration reminder should be sent earlier. A
People who have not responded to the questionnaire should be reminded. C
8 Wording difficulties The expressions used in the questionnaires are difficult to understand. D
9 Volume and description of questionnaires The amount covered in questionnaires is too burdensome. D
The required range of responses to the question is unclear. B
The approximate time to complete each questionnaire should be noted. B
10 Meeting names The name of the meeting should be changed to suit the purpose. A
11 Social media Images and links should be added to the article. A
Information on symptoms and other studies will increase the value of the article. C
  1. The table shows the changes to the study management / design suggested by patients in the initial nine meetings (November 2017 – February 2019). The comments can be divided into 11 categories. Each letter indicates the comment status; A: response completed, B: in progress, C: under consideration, D: unchangeable. Of the 16 comments, 11 have already been implemented or are currently in progress