TABLE 3.
Study step | Inputs from PCD support groups |
Concept and design of study |
|
Questionnaire design |
|
Recruitment of participants | Study participants are recruited using measures such as: |
|
|
Choice and interpretation of results | Summarised results displayed on the website are based on what is most important for participants |
Thematic questionnaires | Thematic questionnaires are developed based on suggestions from participants and PCD support groups |
Display of results on study website | Participants can suggest results to be posted on the website and how to phrase them |
PCD: primary ciliary dykinesia.