VPPRN Patient-Powered Research
Central Nervous System Vasculitis (CNSV)
Every 6 months, we ask our VPPRN community to check-in and tell us how they are doing. The graphs below reflect the scores/ratings of patients with central nervous system vasculitis (CNSV) compared to the Network as a whole. Here is what we learned about flares, fatigue, pain, symptoms of vasculitis, and members’ current state of vasculitis at the January 2026 check-in:
- Compared to patients with other forms of vasculitis, patients with CNSV reported the following:
- similar percentage of flares reported
- higher scores for fatigue
- higher scores/ratings for their symptoms of vasculitis over the past 28 days
- similar scores for pain
- a similar percentage of patients with CNSV reported their vasculitis as currently active
- Compared to patients with other forms of vasculitis, patients with CNSV reported the following:
If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.
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FLARES and VASCULITIS
Flare Reporting: Patients with CNSV reported flare rates similar to those seen across the VPPRN community. At the January 2026 check-in, 21% of patients with CNSV reported experiencing a flare in the past 6 months, matching the percentage reported by the overall VPPRN community.
Patients with CNSV
Entire VPPRN Community
FATIGUE and VASCULITIS
Fatigue: Compared with the overall VPPRN community, patients with CNSV reported higher fatigue levels. At the January 2026 check-in, 100% of patients with CNSV reported fatigue ranging from “a little bit” to “very much” during the past 7 days, versus 88% of participants across the Network.
Patients with CNSV
Entire VPPRN Community
SYMPTOMS of VASCULITIS
Symptoms of Vasculitis: Patients with CNSV reported more vasculitis symptoms over the past 28 days than the overall VPPRN community. At the January 2026 check-in, 15% of patients with CNSV reported having no symptoms, compared with 23% of participants across the Network.
Patients with CNSV
Entire VPPRN Community
PAIN and VASCULITIS
Pain: Patients with CNSV reported pain levels similar to those of the overall VPPRN community. At the January 2026 check-in, 33% of patients with CNSV reported no pain on average over the past 7 days, compared with 28% of participants across the Network.
Patients with CNSV
Entire VPPRN Community
MEMBERS' CURRENT STATE OF VASCULITIS
Members’ Current State of Vasculitis: At the January 2026 check-in, 24% of patients with CNSV reported active vasculitis, a rate similar to the 21% reported in the overall VPPRN community.
Patients with CNSV
Entire VPPRN Community
