Collecting clinical data in primary ciliary dyskinesia- challenges and opportunities.

ABSTRACT: Rationale: Primary ciliary dyskinesia (PCD) is under diagnosed and underestimated. Most clinical research has used some form of questionnaires to capture data but none has been critically evaluated particularly with respect to its end-user feasibility and utility. Objective: To critically appraise a clinical data collection questionnaire for PCD used in a large national PCD consortium in order to apply conclusions in future PCD research. Methods: We describe the development, validation and revision process of a clinical questionnaire for PCD and its evaluation during a national clinical PCD study with respect to data collection and analysis, initial completion rates and user feedback. Results: 14 centers participating in the consortium successfully completed the

SUBMITTER: Amirav I 

PROVIDER: S-EPMC5022703 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature