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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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
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