The EGPA Cafe: Presented by the Vasculitis Patient-Powered Research Network

The EGPA Cafe: Presented by the Vasculitis Patient-Powered Research Network

Welcome and Introductions 0:02
The presenters for this webinar. 2:11
History and Purpose of a Registry 3:07
The Vasculitis Patient-Powered Research Network Overview. 4:40
EGPA Participant Overall Enrollment 7:09
EGPA Registry Key Metrics 8:05
Update on Treatment of Eosinophilic Granulomatosis with Polyangiitis 10:38
ACR/VF Clinical Practice Guidelines for EGPA 11:39
AVOCAPAN for the Treatment of ANCA-Associated Vasculitis 16:40
CanVasc Consensus Recommendations by Dr. Christian Pagnoux 24:52
Patient Reported Outcomes and Quality of Life measures–Measuring outcomes important to patients 40:14
PRO = Patient Reported Outcomes 41:05
QUL=Quality of Life 41:24
Examples of Core Set of PRO QOL Questions 42:10
The Sino-Nasal Outcome Test (SNOT-22) 43:48
AAV-PRO: Development and Validation of the PRO questionnaire for ANCA-associated vasculitis 44:21
Measuring symptom severity and difficulties with ANCA-associated vasculitis 45:27
The Journey to Diagnosis: A Patient-Originated Study 46:35
EGPA Registry Potential Studies on QOL: What’s Next? 47:09