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