VPPRN Patient-Powered Research
VPPRN Community Dashboard
6-MONTH CHECK-IN FORMS – 2023 and 2024
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 and 2024 check-ins.
What did we learn about FLARES and VASCULITIS?
Overall, we see similar rates of reported flares at the check-ins in 2023 and 2024.
- More than two-thirds of patients in the VPPRN community did not report a flare of their vasculitis in the past 6 months.
- Approximately 25% of patients did report a flare.
To better understand why some patients with vasculitis experience flares and some do not, we need the VPPRN community to continue to provide patient data to do the research needed to find answers. Patients power research in vasculitis! Please continue to share your health updates with the VPPRN and continue to stay engaged in research.
What did we learn about FATIGUE and VASCULITIS?
Overall, we see similar ratings of fatigue from our VPPRN community in 2023 and 2024.
At the July 2024 check-in, we learned that:
- Most patients (approximately 88%) experience some fatigue related to their vasculitis. This is consistent with the Network scores from the January 2023, July 2023, and January 2024 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 July 2024 check-in are comparable to the scores in the previous check-ins.
- Most patients reported as having no symptoms of vasculitis (24% with 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 on a scale of 0-10), there were approximately 6% scored on the higher end, with scores ranging from 8-10. This is consistent with the ratings in 2023 and 2024.
Why the range of responses? We can’t say for sure. More research is needed to better understand why some people do better than others. That’s why it is important for you to check-in with the VPPRN every 6 months – even if there are no updates to report, or if your vasculitis is not currently active – this information is important as we collect information over time. The more data we have, the more answers we can find!
What did we learn about PAIN and VASCULITIS?
We saw similar ratings for pain at the 2023 and 2024 check-ins.
- Approximately 50% of patients experienced little to no pain on average, with scores ranging from 0-2 on a scale of 0-10.
- Alternatively, almost 30% of patients with vasculitis experienced moderate to severe pain with scores 5 and above in the 2023 and 2024 check-ins.
Why do some people experience more pain than others? That is a good question and one that the VPPRN wants to understand more as we collect data over time from our VPPRN community with our 6-month check-in forms.
What did we learn about Members' CURRENT STATE of VASCULITIS?
Network members reported similar responses in July 2023, January 2024, and July 2024 regarding the current state of their vasculitis.
- About two-thirds of patients in the VPPRN community reported that they are currently in remission. This is encouraging to see.
- However, we saw approximately 25% of patients who reported that their vasculitis is currently active. This is similar to the responses in July 2023 and January 2024.
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?
Click below and see how patients with each type of vasculitis compare with the VPPRN community as a whole.
Compared to patients with other forms of vasculitis, patients with Behçet’s Disease (BD) reported more flares and higher scores for fatigue, symptoms of vasculitis, and pain at the July 2024 check-in. Additionally, a larger percentage of patients with BD reported their vasculitis as active.
At the July 2024 check-in, patients with central nervous system vasculitis (CNSV) reported similar scores/ratings for their symptoms of vasculitis when compared to patients with other forms of vasculitis. Additionally, a similar percentage of patients with CNSV reported their vasculitis as active. Patients with CNSV, however, reported more flares and scored their fatigue and pain higher than others in the VPPRN community.
At the July 2024 check-in, patients with cryoglobulinemic vasculitis (cryoglobulinemia) reported more flares, higher scores for fatigue (on average), symptoms of vasculitis, and pain (on average) when compared to patients with other forms of vasculitis. A higher percentage of patients with cryoglobulinemic vasculitis reported their vasculitis as active as well.
Compared to patients with other forms of vasculitis, patients with eosinophilic granulomatosis with polyangiitis (EGPA) reported similar scores/ratings for fatigue, symptoms of vasculitis, pain, and current state of vasculitis at the July 2024 check-in. Patients with EGPA, however, reported more flares.
Compared to patients with other forms of vasculitis, patients with giant cell (temporal) arteritis (GCA) reported similar scores/ratings for fatigue, pain, and members’ current state of vasculitis at the July 2024 check-in. We do see differences in scores for symptoms of vasculitis, with a higher percentage of patients with GCA reporting no symptoms at all. Additionally, patients with GCA reported less flares than others in the VPPRN community.
At the July 2024 check-in, patients with granulomatosis with polyangiitis (GPA) reported similar scores/ratings for fatigue, symptoms of vasculitis, pain, and members’ current state of their vasculitis. However, there was a difference in the reporting of flares, with patients with GPA reporting fewer flares than other Network members.
Compared to patients with other forms of vasculitis, patients with IgA vasculitis (Henoch-Schönlein) reported similar scores for fatigue, pain, symptoms of vasculitis, and members’ current status of their vasculitis at the July 2024 check-in. However, we do see a difference in the reporting of flares with patients with IgA vasculitis reporting more flares than others in the Network.
Compared to patients with other forms of vasculitis, patients with microscopic polyangiitis (MPA) reported similar scores for fatigue and symptoms of vasculitis at the July 2024 check-in. There were differences in the flares reported (fewer reported for patients with MPA), pain scores/ratings (lower scores for patients with MPA), and reporting of active vasculitis (smaller percentage reported among patients with MPA).
At the July 2024 check-in, patients with polyarteritis nodosa (PAN) reported similar scores/ratings for fatigue, symptoms of vasculitis, pain, and reporting of active vasculitis when compared to patients with other forms of vasculitis. We do see a difference in the reporting of flares with patients with PAN reporting less flares than others in the Network.
At the July 2024 check-in, patients with Takayasu’s arteritis (TAK) reported similar scores for fatigue and pain when compared to patients with other forms of vasculitis. There were differences in the flares reported (fewer reported for patients with TAK), symptoms of vasculitis (higher scores for patients with TAK), and reporting of active vasculitis (smaller percentage reported among patients with TAK).
Compared to patients with other forms of vasculitis, patients with urticarial vasculitis reported similar scores/ratings for fatigue, symptoms of vasculitis, and pain at the July 2024 check-in. However, we do see higher percentages of reported flares and active vasculitis among patients with urticarial vasculitis.
At the July 2024 check-in, patients with other/suspected diagnosis reported similar scores/ratings for fatigue, symptoms of vasculitis, pain, and members’ current state of their vasculitis when compared to patients with other forms of vasculitis. However, we do see a higher percentage of flares reported among patients with other/suspected diagnosis.
Thank You!
Thank you to the VPPRN community members who shared their health updates with us in 2023 and 2024!
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: [email protected]
- Call/Text: (215) 200-6147
