We would like to find out about the experiences of people who have been tested for Primary Ciliary Dyskinesia (PCD) or are waiting to be tested. If you or a child that you care for has undergone or will have tests, please complete this survey. We are interested in the opinions of those with the disease, as well as those found not to have PCD.
It can be difficult to diagnose PCD and many people have bad, as well as good experiences in the lead up to a diagnosis, whether they have PCD or not. We would like to learn more about peoples’ experience of PCD diagnosis so that we can improve how people with PCD are diagnosed. The European Respiratory Society (ERS) has funded a group of PCD experts and patient representitives to develop guidelines for the diagnosis of patients with primary ciliary dyskinesia (PCD). It is important that the opinions of patients are reflected in the guidelines. This survey will take less than 10 minutes to complete. We will ask several questions about your personal experiences of being tested and then ask you your opinions about how things should be.
This survey is anonymous but if you would like to receive updates or take part in an interview about your experiences of PCD diagnosis you can enter your email address at the end.
