Share your experiences of PCD diagnostic testing

Have you been tested for Primary Ciliary Dyskinesia (PCD)? 

Share your experiences and help shape new European guidelines on PCD diagnosis. 

People who have been tested for PCD (or parents) are invited to complete a short survey to highlight issues that they consider important. 

It can be difficult to diagnose PCD and many people have bad, as well as good experiences leading to a positive or negative diagnosis. We would like to learn more about peoples’ experience of PCD diagnosis so that we can improve how people with PCD are diagnosed. We are interested in opinions from patients who were found not to have PCD as well as those with the disease. 

The European Respiratory Society (ERS) has funded a group of experts and patients to form guidelines for the diagnosis of patients with primary ciliary dyskinesia (PCD). To include the opinions of patients from across Europe in this guideline, we are asking people who have been tested for PCD (or parents) to fill our short survey.

 The survey is available online in 8 languages until 2 November: 

• English: https://www.isurvey.soton.ac.uk/12069 
• Dutch: https://www.isurvey.soton.ac.uk/12507 
• French: https://www.isurvey.soton.ac.uk/12543 
• Polish: https://www.isurvey.soton.ac.uk/12494 
• Portuguese: https://www.isurvey.soton.ac.uk/12503 
• German: https://www.isurvey.soton.ac.uk/12504 
• Italian: https://www.isurvey.soton.ac.uk/12497 
• Russian: https://www.isurvey.soton.ac.uk/12527 

If you would like to receive updates or would be willing to talk to a researcher to provide more in-depth insight into your experiences, you can enter your email address at the end of the survey.