Grant: CIHR-ICRH Travel Awards - General pool

Aligned with the ICRH institute’s mandate of addressing the burden of respiratory disease, this research project is the first of it’s kind to investigate the impact of respiratory conditions on quality of life, physical activity, daily function and systemic symptoms in EDS/G-HSD. Given that patients with EDS/G-HSD report prolonged periods of diagnostic investigations, with many having undiagnosed respiratory conditions, this research identifies the respiratory symptom management and healthcare utilization needs in this population. This research study uses both quantitative and qualitative methods including interviews with patients to capture their needs and values. At the 2023 ATS conference, we aim to present the findings of this research as a model for a patient-centered approach to investigation in respiratory health research. Finally, individuals with EDS/G-HSD have a multi-systemic condition that requires interdisciplinary collaboration. Thus, aligned with ICRH’s strategic priority of “accelerating knowledge through collaboration”, we seek to engage a broad audience at the 2023 ATS for future collaboration in this research area.