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Patients' research priorities and participation in primary ciliary dyskinesia research
2025-04-06
respiratory medicine
Title + abstract only
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IntroductionPeople living with chronic diseases can provide a unique perspective for research that often differs from that of healthcare professionals. This is particularly important in rare diseases like primary ciliary dyskinesia (PCD), with many knowledge gaps and limited research resources. We aimed to assess participation of patients and caregivers in PCD research and identify their research priorities in a mixed- method study. MethodsWe conducted in-depth, semi-structured interviews with ...
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