TABLE 3

Participant involvement in the study

Study stepInputs from PCD support groups
Concept and design of study

  • The idea for the study came from PCD support groups

  • The study design was developed in close communication between PCD support groups and the study team

Questionnaire design

  • The content of the baseline and follow-up questionnaires was decided based on ideas from PCD support group representatives, healthcare staff and researchers

  • Wording of the questionnaires was checked by PCD support group representatives to ensure that the language was understandable and meaningful for all

Recruitment of participantsStudy participants are recruited using measures such as:

  • PCD support groups social media post links to the study website

  • E-mails to PCD support group members

  • Presentations about the study at PCD support group meetings and in newsletters

Choice and interpretation of resultsSummarised results displayed on the website are based on what is most important for participants
Thematic questionnairesThematic questionnaires are developed based on suggestions from participants and PCD support groups
Display of results on study websiteParticipants can suggest results to be posted on the website and how to phrase them

PCD: primary ciliary dykinesia.