The Ear-Nose-Throat (ENT) Prospective International Cohort of patients with Primary Ciliary Dyskinesia (EPIC-PCD) is a prospective observational clinical cohort study, set up as a multinational multi-centre study. It is embedded into routine patient care of participating reference centres for PCD and patients keep being managed according to local procedures and guidelines.
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Sinonasal symptoms and signs
Timeframe: at baseline
Course of sinonasal symptoms and signs (year 1)
Timeframe: at 12 months from recruitment
Course of sinonasal symptoms and signs (year 2)
Timeframe: at 24 months from recruitment
Otological symptoms and signs
Timeframe: at baseline
Course of otological symptoms and signs (year 1)
Timeframe: at 12 months from recruitment
Course of otological symptoms and signs (year 2)
Timeframe: at 24 months from recruitment
Nasal endoscopy (description of nasal mucosa)
Timeframe: at baseline
Nasal endoscopy (changes of nasal mucosa at year 1)
Timeframe: at 12 months from recruitment
Nasal endoscopy (changes of nasal mucosa at year 2)
Timeframe: at 24 months from recruitment
Nasal endoscopy (nasal polyps)
Timeframe: at baseline
Nasal endoscopy (nasal polyps at year 1)
Timeframe: at 12 months from recruitment
Nasal endoscopy (nasal polyps at year 2)
Timeframe: at 24 months from recruitment
Sinonasal examination (Lidholdt score)
Timeframe: at baseline
Sinonasal examination (Lidholdt score at year 1)
Timeframe: at 12 months from recruitment
Sinonasal examination (Lidholdt score at year 2)
Timeframe: at 24 months from recruitment
Ear examination (ear discharge)
Timeframe: at baseline
Ear examination (ear discharge at year 1)
Timeframe: at 12 months from recruitment
Ear examination (ear discharge at year 2)
Timeframe: at 24 months from recruitment
Otoscopy (description of the tympanic membrane)
Timeframe: at baseline
Otoscopy (description of the tympanic membrane at year 1)
Timeframe: at 12 months from recruitment
Otoscopy (description of the tympanic membrane at year 2)
Timeframe: at 24 months from recruitment
Tympanometry
Timeframe: at baseline
Tympanometry (at year 1)
Timeframe: at 12 months from recruitment
Tympanometry (at year 2)
Timeframe: at 24 months from recruitment
Audiometry
Timeframe: at baseline
Audiometry (at year 1)
Timeframe: at 12 months from recruitment
Audiometry (at year 2)
Timeframe: at 24 months from recruitment