VPPRN Patient-Powered Research
VPPRN Community Dashboard
6-MONTH CHECK-IN FORMS (Jan 2023-Jan 2026)
Every January and July, we ask our VPPRN community to check-in and share updates on their health.
Take a look below to see what we learned about flares, fatigue, pain, symptoms of vasculitis, and members’ current state of their vasculitis at the 2023, 2024, 2025, and January 2026 check-ins.
What did we learn about FLARES and VASCULITIS?
Overall, the percentage of participants reporting a flare has remained fairly consistent across VPPRN check-ins.
Similar to previous years:
- Approximately two-thirds of patients in the VPPRN community did NOT report a flare of their vasculitis in the past 6 months.
- A little less than a quarter of patients reported a flare.
Researchers are working to better understand why some people with vasculitis experience flares while others do not. The answers to these important questions come from patients like you who share their experiences over time.
Every health update you provide helps move vasculitis research forward. By staying involved in the VPPRN and completing your check-ins, you are helping researchers learn more about flares, improve care, and work toward better outcomes for everyone living with vasculitis.
What did we learn about FATIGUE and VASCULITIS?
Overall, we see similar ratings of fatigue from our VPPRN community in 2023, 2024, 2025, and January 2026.
At the January 2026 check-in, we learned that:
- Most patients (88%) reported experiencing some fatigue related to their vasculitis. This is consistent with the Network scores from the 2023, 2024, and 2025 check-ins.
Fatigue is common among patients with vasculitis. Patients may have fatigue even if other vasculitis symptoms are under control. By completing the VPPRN check-in forms every 6 months, it will tell us more about fatigue and its impact on quality of life for people living with vasculitis. This research is vital and may lead us to identify ways to improve overall quality of life.
What did we learn about SYMPTOMS of VASCULITIS?
The scores for symptoms of vasculitis from the January 2026 check-in are comparable to the scores in the previous check-ins.
- Almost a quarter of patients reported having no symptoms of vasculitis (score = 0) over the past 28 days. This is similar to the scores in the previous check-ins.
- While the majority of the VPPRN community scored on the lower half of the scale (80% with scores 0-5), there were approximately 6% scored on the higher end, with scores ranging from 8-10. This is consistent with the ratings in 2023, 2024, and 2025.
Why the range of responses? We can’t say for sure. Right now, we don’t have all the answers – some people do better than others, and we’re still learning why. That’s why your check-ins with the VPPRN every 6 months are so important. Even if there’s nothing new to report or your vasculitis is quiet, your updates help us see the full picture over time. The more we learn from everyone’s experiences, the closer we get to answers that can help all of us.
What did we learn about PAIN and VASCULITIS?
The percentage of patients reporting pain was similar across the 2023, 2024, 2025, and January 2026 check-ins.
- Nearly half of patients reported little to no pain, with average pain scores in the 0–2 range on a 0–10 scale.
- Alternatively, 27% of patients with vasculitis experienced moderate to severe pain with scores 5 and above in the 2023, 2024, and 2025 check-ins.
Why do some people experience more pain than others? That’s an important question, and one researchers are working to better understand.
By sharing your experiences through the VPPRN 6-month check-in forms, you’re helping researchers learn more about how pain affects people living with vasculitis. As more patients contribute their health updates over time, we can begin to identify patterns and better understand why pain levels may differ from person to person.
Every check-in adds to our knowledge and brings us closer to finding ways to improve care and quality of life for everyone affected by vasculitis. Thank you for being part of the research.
What did we learn about Members' CURRENT STATE of VASCULITIS?
Network members reported similar responses regarding their current state of vasculitis at the 2023, 2024, 2025, and January 2026 check-ins.
- 67% of patients in the VPPRN community reported that they are currently in remission. This is encouraging to see.
- However, we saw 21% of patients who reported that their vasculitis is currently active. This is similar to the responses in 2023, 2024, and 2025.
To better understand why some patients with vasculitis are in remission and some are not, patient data is key. We need the VPPRN community to continue to provide their health updates to us. The data provided is mobilizing our team of doctors and researchers with the information they need to work towards improving the quality of life for all patients across all types of vasculitis and ages.
How Do You Compare to Others in the VPPRN Community?
Let’s look at each type of vasculitis individually.
Click below to learn about each type of vasculitis and see how patient experiences compare across the VPPRN community.
Compared with patients living with other forms of vasculitis, patients with Behçet’s Disease (BD) reported more flares and higher levels of fatigue, vasculitis symptoms, and pain at the January 2026 check-in. Patients with BD were also more likely to report that their disease was active.
At the January 2026 check-in, patients with central nervous system vasculitis (CNSV) reported higher levels of fatigue and more vasculitis symptoms compared with the overall VPPRN community. However, reports of flares, pain, and active disease were similar to those seen across the Network.
At the January 2026 check-in, patients with cryoglobulinemic vasculitis (cryoglobulinemia) reported similar levels of fatigue and active disease compared with patients with other forms of vasculitis. However, they reported more frequent flares, higher pain levels, and more symptoms.
Compared to patients with other forms of vasculitis, patients with eosinophilic granulomatosis with polyangiitis (EGPA) reported similar scores/ratings for flares, fatigue, pain, and current state of vasculitis at the January 2026 check-in. Patients with EGPA, however, reported higher scores/ratings for their symptoms of vasculitis over the past 28 days.
Compared to patients with other forms of vasculitis, patients with giant cell arteritis (GCA) reported similar scores/ratings for flares, fatigue, pain, and members’ current state of vasculitis at the January 2026 check-in. We do see a difference in scores for symptoms of vasculitis, with a higher percentage of patients with GCA reporting no symptoms at all.
At the January 2026 check-in, patients with granulomatosis with polyangiitis (GPA) reported less flares and similar rates/scores of fatigue, vasculitis symptoms, and pain compared to other Network members. Notably, a higher percentage of patients with GPA indicated their vasculitis was in remission.
The January 2026 check-in showed that patients with IgA vasculitis (Henoch-Schönlein) had similar experiences with fatigue, vasculitis symptoms, and current disease state compared with other vasculitis groups. However, flares and pain remained more common among patients with IgA vasculitis.
At the January 2026 check-in, patients with microscopic polyangiitis (MPA) reported similar levels of fatigue, pain, and vasculitis symptoms compared to patients with other forms of vasculitis. A smaller percentage of patients with MPA reported a flare in the past 6 months and we do see a difference in scores for symptoms of vasculitis, with a higher percentage of patients with GCA reporting no symptoms at all.
The January 2026 check-in showed that patients with polyarteritis nodosa (PAN) reported similar experiences with flares and fatigue compared with patients with other forms of vasculitis. However, patients with PAN reported more vasculitis symptoms, higher pain levels, and were more likely to report active disease.
At the January 2026 check-in, patients with Takayasu’s arteritis (TAK) reported similar levels of flares, fatigue, pain, and current state of disease compared to those with other forms of vasculitis. Patients with TAK, however, reported higher scores/ratings for their symptoms of vasculitis over the past 28 days.
At the January 2026 check-in, patients with urticarial vasculitis reported similar scores/ratings for fatigue, pain, and vasculitis symptoms compared to those with other forms of vasculitis. However, they reported more frequent flares, and a larger percentage indicated active disease.
The January 2026 check-in showed that patients with other/suspected vasculitis diagnoses reported comparable levels of flares reported, fatigue, vasculitis symptoms, and pain relative to patients with other forms of vasculitis. Notably, a smaller proportion of these patients reported their disease to be in remission.
Thank You!
Thank you to the VPPRN community members who shared their health updates with us!
We appreciate your enthusiasm and continued engagement with the VPPRN.
What’s Next? More Research!
There is still much to learn about vasculitis, and the VPPRN community can change that.
The VPPRN is a PATIENT-POWERED network which means that PATIENTS POWER VASCULITIS RESEARCH.
The more patient data our VPPRN community provides, the more answers we can find.
- Why do some patients do better than others?
- How can we better understand why these differences exist?
The answer is RESEARCH. Please stay involved and engaged in the VPPRN, and please continue to share your health updates every January and July.
We are stronger together.
Together we make a difference.
Are you a member of the VPPRN?
Our vision is to improve the health of vasculitis patients by developing early-diagnosis methods, discovering more effective treatments, and finding cures. We invite patients with vasculitis, caregivers and parents/guardians of patients with vasculitis to come together to learn more about symptoms, share experiences, and to become a part of a research network to improve lives.
You can help us find answers for the questions most important to you and other patients living with vasculitis.
Questions?
The Vasculitis Patient-Powered Research Network (VPPRN) is here to make participation in the Network easy for you. The VPPRN Network Manager, Christine Yeung, is available if you have any questions or concerns.
- Email: christine.yeung@pennmedicine.upenn.edu
- Call/Text: (215) 200-6147