5907. Longitudinal study assessing the effect of respiratory exacerbations on quality of life and disease progression in primary ciliary dyskinesia

Status: Recruiting Soon

Summary

This longitudinal study will examine respiratory tract exacerbations in primary ciliary dyskinesia. Given their negative impact on the lives of people with primary ciliary dyskinesia, respiratory tract exacerbations are obvious targets for interventional trials designed to establish evidence-based guidelines for their prevention and treatment. This longitudinal, multicenter study will define clinical features that characterize exacerbations, and examine innovative mobile health monitoring tools, including home spirometry, validated disease-specific quality of life instruments, and novel bedside digital cough monitoring over a one-year period.

Participating Sites

University of North Carolina at Chapel Hill, Washington University in St. Louis (St. Louis, Missouri), University of Washington (Seattle, Washington), University of Colorado (Denver, Colorado), Stanford University (Palo Alto, California), The Hospital for Sick Children (Toronto, Ontario), McGill University (Montreal, Quebec)