TABLE 1

Modules included in the standardised pulmonary ciliary dyskinesia (PCD) follow-up form (FOLLOW-PCD)

To be completed by clinical staff
 1Patient information, diagnostic evaluation and baseline medical history
 2Physical examination of lungs and heart
 3Physical examination of upper airways and ears
 4Growth measurements and clinical tests (lung function, imaging, microbiology)
 5Hospitalisations and treatment (surgeries, medication, physiotherapy)
 6Clinical symptoms (version A)
 7Environment and lifestyle (version A)
To be completed by patients
 8Clinical symptoms (version B)
 9Environment and lifestyle (version B)