| 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 |
