TABLE 3.

Participant involvement in the study

Study step	Inputs 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 participants	Study 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 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.