- Can I take part in the study if I am not 100% sure that I have PCD?
Yes, as long as you have a clinical suspicion of PCD, you can take part in the study.
- Does it make sense to participate in the study if I have PCD but have not got a Covid-19 infection yet?
Yes, it is important that people with PCD who have not been infected by Covid-19 or their parents also participate in the study and that their experiences are incorporated into the study. We are not only investigating how people with PCD infected by Covid-19 are doing. We are also looking at how best to protect yourself, what the risk is for people who have not yet been infected and how people who have not been infected behave in everyday life to avoid becoming infected. The more participants with PCD in the study, the more meaningful the results will be.
- Can I take part in the study if I have already had a COVID-19 infection?
Yes, you can take part in the study if you had a COVID-19 infection alreaedy. We would like to know which symptoms you had and how severely you were affected. It is still uncertain if people can get a COVID-19 infection more than once, so also for this reason we are happy if people who already had a COVID-19 infection participate in the study.
- Will it be time consuming?
Not really. The first questionnaire, focusing on your normal PCD symptoms, will take you some time. However, the follow-up questionnaires sent once a week will be much shorter. It will take approximately 3 minutes to complete the short follow-up questionnaire if you have no new symptoms or worsening of usual symptoms. If you have a worsening or new occurrence of symptoms, the questionnaire might take up to 10 minutes to complete.
- What if I forgot to fill in a weekly questionnaire?
This is not a big issue, you will be able to continue participating in the study and just fill in the questionnaire the week after. Of course, we would like you to complete all questionnaires to get the best possible data for the research, and thereby be able to say how Covid-19 affects people with PCD.
- Can I change my mind and stop the study at any time?
Yes, you can stop participating at any time. If you want to stop your participation, you can write an email to firstname.lastname@example.org.
- How long will the study last?
The study will last as long as the COVID-19 outbreak lasts. It will probably last between one and two years, but we cannot have an exact answer to this question.
- Will my name be mentioned in the published results of the research?
No, never! Your name and all information which could lead somebody to identify who you are will be kept strictly confidential and will never be mentioned anywhere. This includes information such as your birth year, email address, and phone number.
- Can I participate in behalf of my child?
Yes, if your child is under 14, you will be asked to answer the questionnaire for him/her. Of course, your child is welcome to help you. Please, remember to write the birth year of your child at the registration and not your own.