VPPRN Patient-Powered Research
VPPRN Research Poster Gallery
The Vasculitis Patient-Powered Research Network (VPPRN) is proud to present this poster gallery to not only showcase the breadth of research of the VPPRN, but the vital role our Network members play in the design and execution of these studies.
In this gallery, you will find an overview of the current research from experts in the field using VPPRN data, and insight from our lead authors as to why the study is important to members of the VPPRN.
It is because of the continued participation and engagement of our VPPRN members that research studies like these are possible.
Data drives research & we cannot do research without our VPPRN members. For that, we thank our Network.
2026 VPPRN POSTERS
Exercise Practices Among Patients with Takayasu’s Arteritis: Results of the VPPRN EXERT Study
ABOUT THE STUDY
For the general population, exercise has known benefits on cardiovascular health. The benefits of exercise in patients with Takayasu’s arteritis, however, have not been well studied. Whether or not patients with Takayasu’s arteritis are able to exercise safely and the advice they receive from health care providers related to exercise needs to be further investigated.
This study aimed to better understand how people living with Takayasu’s arteritis exercise and how physical activity may affect their symptoms and overall well-being. What we learn could help guide future exercise recommendations for people with Takayasu’s arteritis and support the development of studies that explore how exercise may improve health and quality of life for people living with vasculitis.
For additional information on this closed study, click HERE
STUDY AIM
This study aims to better understand how people living with Takayasu’s arteritis (TAK) stay active and how arm symptoms may affect their daily lives and exercise routines.
Through this study, we hoped to:
- Learn about exercise habits, including how often people exercise, the types of activities they do, and challenges that may make it harder to stay active
- Understand arm symptoms, such as discomfort, pain, or fatigue that can occur with activity
- Identify strategies and tips that may help reduce arm discomfort and make exercise more manageable
PARTICIPANTS
A total of 90 patients with TAK participated in this study.
MAJOR FINDINGS
- Many people living with Takayasu’s arteritis (TAK) are able to exercise regularly.
- Challenges to staying active include both everyday factors (such as time or motivation) and symptoms related to TAK.
- People with TAK reported a similar overall amount of weekly physical activity compared with people without TAK.
- Arm symptoms that start quickly during activity or take longer than a minute to improve may be signs of more severe arm involvement.
- Many people with TAK reported that exercise—especially exercises that strengthen the arms—helps improve arm symptoms.
- More research is needed to understand how exercise can best support people living with TAK and to develop exercise programs specifically designed for this community.
ROLE OF THE VPPRN
This research is being conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team includes 1 VPPRN Patient Research Partner, Katrina Bargender, who was helpful in the design of the survey, marketing and promotion, and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
Stay tuned! More to come!
2025 VPPRN POSTERS
Patterns of Sinonasal Symptoms in Patients with ANCA-Associated Vasculitis: Baseline Results of the VPPRN V-SNIFF Study
ABOUT THE STUDY
Inflammation in the nose and sinuses is a common problem for patients with ANCA-associated vasculitis (including EGPA, GPA, MPA). These symptoms can linger even when the rest of the vasculitis is well-controlled.
The Vasculitis Sino-Nasal Indicators For Flares (V-SNIFF) study aims to learn more about how symptoms in the nose and sinuses impact patients living with vasculitis and relate to relapse or flare of vasculitis.
For additional information on this on-going study, click HERE
STUDY AIM
Through this study, we aim to learn more about how symptoms in the nose and sinuses impact patients living with vasculitis and relate to relapse or flare of vasculitis.
PARTICIPANTS
MAJOR FINDINGS
People with AAV experience nose and sinus symptoms in many different ways. Our research shows that symptoms can continue even when vasculitis is considered under control.
The 5-minute SNOT-22+ survey adds vasculitis-specific questions to better capture what patients are experiencing and help guide conversations with their healthcare team.
Future research will explore whether SNOT-22+ can help predict flares and track how patients respond to treatment.
ROLE OF THE VPPRN
This research is being conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team includes 2 VPPRN Patient Research Partners, Mary Gibson and Darrin White, who have been helpful in the design of the survey, marketing and promotion, and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
The Association Between Age at Diagnosis and Health-Related Quality of Life for Patients with ANCA-Associated Vasculitis
ABOUT THE STUDY
ANCA-associated vasculitis (AAV) can affect people at any age and may impact quality of life in many ways.
We do not yet know whether the experience of living with AAV differs for people diagnosed in childhood compared with those diagnosed as adults.
This study explored how age at diagnosis is related to health and quality of life for people living with AAV.
STUDY AIM
This study examined the relationship between age at diagnosis of AAV and health-related quality of life (HRQoL).
PARTICIPANTS
This study is comprised of data from 2,009 patients: 1351 (67.2%) GPA, 301 (15.0%) MPA, 357 (17.8%) EGPA.
The data was collected from members in the VPPRN and the Vasculitis Clinical Research Consortium (VCRC).
MAJOR FINDINGS
People living with AAV often experience challenges that affect their quality of life, with anxiety being one of the most common concerns.
The age when someone is diagnosed with AAV may influence how the disease affects different areas of life.
Compared with people diagnosed at older ages, those diagnosed at younger ages reported more challenges with anxiety but fewer difficulties with fatigue, sleep, depression, pain, social activities, and physical function.
Learning how age at diagnosis affects quality of life can help researchers and healthcare providers develop better, more personalized support and treatments for people living with AAV at every stage of life.
ROLE OF THE VPPRN
This research was conducted through the VPPRN and demonstrates the importance of the data we collect. The project team included 2 VPPRN Patient Research Partners, Katrina Bargender and Amy Bolton, who were helpful in the interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
2024 VPPRN POSTERS
Sleep Disturbances in Patients with Vasculitis: Results of the VPPRN SleepVasc Study
ABOUT THE STUDY
Patients living with vasculitis often complain of difficulty with sleep and fatigue. The VPPRN Quality of Sleep in Vasculitis Research Study (SleepVasc) aims to learn more about sleep and fatigue in patients living with vasculitis. By understanding factors contributing to both good and poor sleep habits, we may learn how to decrease adverse effects linked to poor sleep and identify ways to improve overall quality of life.
STUDY AIM
Good sleep is critical for maintaining a high quality of life. People who are sleep deprived have an increased risk of serious medical conditions like heart disease and mental illness.
Patients living with vasculitis often complain of difficulty with sleep and fatigue. Fatigue may lead to decreased energy, irritability, and problems focusing. All of these have negative effects on quality of life and physical and mental health.
The aim of this VPPRN study was to learn more about sleep and fatigue in patients living with vasculitis. By understanding factors contributing to both good and poor sleep habits, we may learn how to decrease adverse effects linked to poor sleep and identify ways to improve overall quality of life.
PARTICIPANTS
More than 1,000 members in the VPPRN participated in this study. All forms of vasculitis were represented.
MAJOR FINDINGS
- We found that most patients (~80%) with vasculitis experience sleep disturbances that affect their daily function.
- Patients on higher doses of prednisone appear to be at a higher risk of sleep disturbances.
- Future work will explore potential causes of sleep disturbances in vasculitis patient in order to identify ways to help patients get better sleep and improve quality of life.
ROLE OF THE VPPRN
This research was conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team included a VPPRN Patient Research Partner (Molly Mason) who was helpful in the design of the survey, marketing and promotion, and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
Neurologic Involvement in ANCA-Associated Vasculitis
ABOUT THE STUDY
Neurologic involvement is common in people with ANCA-associated vasculitis (AAV) and can have a significant impact on daily life and overall well-being.
Patients and physicians may not always experience or describe symptoms in the same way. Understanding both perspectives is important for gaining a more complete picture of the disease and improving care.
Because most information about neurologic involvement has come from physician reports, this study focused on the patient perspective. By learning directly from patients, researchers hope to better understand the impact of neurologic involvement in AAV and improve future research and care.
STUDY AIM
This project assessed the prevalence and impact of NI on quality of life in patients with AAV enrolled in the VPPRN.
The findings help us better understand where patient and physician experiences align, and where they differ, and may improve how information is collected and used to care for people living with vasculitis.
PARTICIPANTS
This study used data from VPPRN members with a diagnosis of GPA, MPA, or EGPA who were 18 years or older at enrollment. Data collected between 2014 and 2022 were included in the analysis.
Total number of patients = 1,465
MAJOR FINDINGS
- Neurologic involvement is common in patients with AAV and is associated with lower quality of life.
- Patients with neurologic involvement are often older at diagnosis, more likely to be ANCA-positive, and report more severe disease with a wider range of symptoms.
- Kidney involvement is similar in patients with and without neurologic involvement.
ROLE OF THE VPPRN
This research was conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team included a VPPRN Patient Research Partner (David Badenoch) who was helpful in the interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
Assessing Need and Preferences for a Mind-Body Intervention in Patients with Vasculitis
ABOUT THE STUDY
After a diagnosis of vasculitis, patients may face uncertainty about recurrence or progression, how to manage their disease, how to interpret physiological changes in their bodies, and new roles, including when and how to engage in medical visits and tests. Illness-related uncertainty is common in patients with vasculitis and is associated with measures of depression, anxiety, and other ways vasculitis affects people.
Mind-body practices focus on the interactions between the brain, mind, body, and behavior and offer a holistic approach to address stress-related physiological, psychological, and behavioral responses.
The study aimed to gauge patients’ level of interest in a Mind-Body Intervention designed to help build skills to manage the uncertainty, pain, fatigue, and other sources of stress associated with living with vasculitis.
STUDY AIM
This study explored whether a mind-body program could help patients build skills like resilience and learn what type of support would be most helpful.
PARTICIPANTS
475 patients in the VPPRN participated in this study. Most forms of vasculitis were represented.
MAJOR FINDINGS
- A short 7-question tool to measure uncertainty for people living with vasculitis and other rheumatic diseases was developed based on these findings.
- Higher levels of uncertainty were linked to greater anxiety, depression, and impact on daily life.
- Understanding and addressing health-related uncertainty may help improve emotional well-being and guide support and care.
- This tool may help healthcare teams identify people who could benefit from additional resources, support, or interventions.
ROLE OF THE VPPRN
This research was conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team included 2 VPPRN Patient Research Partners, Stacey Ivits and Corrie Stone-Johnson, who were helpful in the design of the survey, marketing and promotion, and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
VascStrong: Vasculitis Strength Study
Data results from this VPPRN study have been published!
STUDY OVERVIEW AND FINDINGS
Living with vasculitis or another long-term health condition can sometimes make it harder for the body to recover from illness, stress, or everyday challenges. Some people describe this as feeling weaker, more tired, or less able to “bounce back.” Doctors call this experience frailty.
Dr. Sebastian Sattui Cortes and the Vasculitis Patient-Powered Research Network (VPPRN) created the Vasculitis Strength Study to better understand how common frailty is among people with vasculitis and how it affects daily life, health, and disease outcomes.
A total of 328 adults with vasculitis took part in the study by completing online surveys at the start of the study and again one year later. Participants answered a short, well-tested questionnaire (the FRAIL scale) along with other questions about their health and quality of life.
What we learned from patients:
- Many people with vasculitis show signs of frailty or are at risk of becoming frail, no matter which type of vasculitis they have.
- Frailty is not just about age. It was more closely linked to overall health, how patients rated their disease, and weight, rather than getting older alone.
- Frailty can change over time. Some people felt weaker over the year, while others improved and felt stronger.
- People who felt frail or prefrail were more likely to have health problems, such as flares or hospital stays, showing the importance of extra support and follow-up.
Overall, this study highlights that feeling frail is common in vasculitis and may be a warning sign that someone needs additional care, resources, or monitoring to stay as healthy as possible.
2023 VPPRN POSTERS
Reproductive Outcomes for Women with Vasculitis
Data results from this VPPRN substudy have been published!
ABOUT THE STUDY
There are limited data on reproductive outcomes in patients with vasculitis. To better understand the relationship between vasculitis and pregnancy, the Vasculitis Pregnancy Registry (VPREG) was developed to answer the question: how does vasculitis impact reproductive health. VPREG is an online, patient-driven, global, prospective pregnancy registry designed to collect observational data to increase our understanding of pregnancies in people living with vasculitis.
STUDY AIM
Patients and medical professionals have limited information to make important decisions about pregnancy in vasculitis. Limited data exists on reproductive outcomes in patients with vasculitis.
The Vasculitis Pregnancy Registry (VPREG) is an online, patient-driven, global, prospective pregnancy registry designed to collect observational data to increase our understanding of pregnancies in people living with vasculitis. This study aims to answer the question: how does vasculitis impact reproductive health.
Analysis of the data submitted by participants registered in VPREG is presented here.
PARTICIPANTS
147 women enrolled in VPREG participated this study. Most forms of vasculitis were represented.
MAJOR FINDINGS
- Most women gave birth to healthy babies by vaginal delivery at full term (> 37 weeks gestation).
- Most patients did not require hospitalization for their vasculitis during pregnancy.
- Most women reported preserved wellness and low pain during pregnancy.
- This information can be used to inform decisions about reproductive health in vasculitis.
ROLE OF THE VPPRN
VPREG is an ongoing research study conducted completely through the VPPRN and demonstrates the efficiency and power of working with an engaged group of patients to advance research. The project team includes a VPPRN Patient Research Partner (Heather), a 2-time participant of the VPREG study. She provides her unique insight and perspective in the study development, growth and enhancement, promotion, and interpretation of the data results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN and patients eager to share their pregnancy journey with the VPREG Study Team to advance research in vasculitis.
Exploring Reproductive Experiences with Women Enrolled in VPREG (Vasculitis Pregnancy Registry)
Data results from this VPPRN substudy have been published!
ABOUT THE STUDY
There are limited data on reproductive outcomes in patients with vasculitis. To better understand the relationship between vasculitis and pregnancy, the Vasculitis Pregnancy Registry (VPREG) was developed to answer the question: how does vasculitis impact reproductive health. VPREG is an online, patient-driven, global, prospective pregnancy registry designed to collect observational data to increase our understanding of pregnancies in people living with vasculitis.
STUDY AIM
Patients and medical professionals have limited information to make important decisions about pregnancy in vasculitis. Limited data exists on reproductive outcomes in patients with vasculitis.
The Vasculitis Pregnancy Registry (VPREG) is an online, patient-driven, global, prospective pregnancy registry designed to collect observational data to increase our understanding of pregnancies in people living with vasculitis. This study aims to answer the question: how does vasculitis impact reproductive health.
Eighteen women enrolled in VPREG agreed to participate an hour-long interview discussing their experiences with pregnancy. Their feedback are presented here.
PARTICIPANTS
18 women enrolled in VPREG participated this study. Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis was the most reported vasculitis diagnosis followed by Takayasu’s arteritis and Behçet’s disease.
MAJOR FINDINGS
Four major themes identified during these interviews demonstrate common experiences among these women:
- Women sought information about pregnancy from many sources (family, physicians, online resources).
- Most women with vasculitis had successful pregnancies.
- Women relied on conversations with family and physicians to decide about medications for vasculitis during pregnancy.
- Women used self-advocacy during pregnancy to optimize communication between medical providers.
This study provides insight into the reproductive journeys of women with vasculitis.
ROLE OF THE VPPRN
VPREG is an ongoing research study conducted completely through the VPPRN and demonstrates the efficiency and power of working with an engaged group of patients to advance research. The project team includes a VPPRN Patient Research Partner (Heather), a 2-time participant of the VPREG study. She provides her unique insight and perspective in the study development, growth and enhancement, promotion, and interpretation of the data results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN and patients eager to share their pregnancy journey with the VPREG Study Team to advance research in vasculitis.
2022 VPPRN POSTERS
Characteristics of Patients with Self-Reported Diagnosis of Urticarial Vasculitis
STUDY AIM
Urticarial vasculitis (UV) is a rare disease (annual incidence of < 1 per million) and as such, difficult to do traditional center-based research.
Patient participation in research is important but research studies are often not accessible to patients who do not live near a study center. The Vasculitis Patient-Powered Research Network (VPPRN) allows participation by patients with vasculitis from across the world; however, it is important to ensure that the data being collected by the VPPRN is of high quality.
The aim of this study is to describe and validate the patient-reported data within the VPPRN for UV. This project is part of a larger effort to validate the data within the VPPRN for each type of vasculitis.
MAJOR FINDINGS
This study evaluated data provided by patients in the VPPRN with Urticarial Vasculitis and found that the signs and symptoms of disease, biopsy and blood test results, and treatments are similar to what has been reported in studies in which data were collected by physician researchers through in-person visits.
These results are quite important and highlight that the VPPRN online registry provides a feasible and cost-effective method of conducting research by directly engaging patients.
ROLE OF THE VPPRN
This research was conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team included a VPPRN Patient Research Partner (Dianne G. Shaw) who was helpful in the design of the survey and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
VascSkin: Skin Vasculitis Quality of Life Survey
Data results from this VPPRN study have been published!
STUDY OVERVIEW AND FINDINGS
Skin involvement caused by vasculitis can be painful, burning, itching, and visible to others. Their impact on quality of life and well-being can be serious and is poorly understood by direct care providers.
Dr. Robert Micheletti, assistant professor of dermatology at the Hospital of the University of Pennsylvania, in partnership with the Vasculitis Patient-Powered Research Network (VPPRN), launched the VascSkin Study to better understand the impact of vasculitis-related skin involvement on patients’ quality of life.
190 adult patients in the VPPRN participated in this study. Based on the data collected using the Effects of Skin Disease on Quality of Life Survey (Skindex-29) and patient-reported data collected online from the VPPRN, we found that patients with skin manifestations of vasculitis have reduced scores in several measures of quality of life. These results suggest that skin vasculitis has a significant impact on health and well-being and a substantial impact on patients’ symptoms and self-perception of health.
Guided Tour of the Poster Gallery
Watch Michael Putman, MD, MSCI from the Medical College of Wisconsin on this tour! He leads us through the gallery by providing an overview of the posters and discussing the impact of Network member engagement in the research of the Vasculitis Patient-Powered Research Network.
VPPRN POSTER #1
STUDY AIM:
To compare the clinical characteristics and determine the reliability of a self-reported diagnosis of giant cell arteritis (GCA) or Takayasu’s arteritis (TAK) in an international, internet-based cohort.
VPPRN POSTER #2
STUDY AIM:
Describe an internet-based cohort of participants with a self-reported diagnosis of PAN and determine how many met established criteria for PAN.
VPPRN POSTER #3
STUDY AIM:
Relapses are common in vasculitis and preventing relapses is a goal of treatment. It is unknown to what degree patients value relapse avoidance and how much risk they are willing to accept to avoid relapses. With patient partners we designed, piloted, and administered a survey called the Vasculitis: Effects of Remission Maintenance Therapy on Relapse and Side Effects: Patient Preferences (VERITAS).
VPPRN POSTER #4
Plasma Exchange for ANCA-Associated Vasculitis: An International Survey of Patient Preferences
Data results from this VPPRN study have been published!
This research study focused on patient values and preferences regarding plasma exchange (also known and plasmapheresis) as a treatment for ANCA-associated vasculitis. We found there was considerable variability in patients’ choices: 1/3 of respondents chose plasma exchange regardless of risk, 1/5 of respondents chose PLEX but only at higher risks, and 1/6 of respondents declined plasma exchange under any situation. Predictors of choosing treatment with plasma exchange were previous treatment with dialysis, previous treatment with plasma exchange, risk of kidney failure or serious infection, and country. Our findings show that there is a need to engage in shared decision-making between patients and physicians when considering plasma exchange in ANCA-associated vasculitis including for patients at both high and low risk of kidney failure.
VPPRN POSTER #5
An International Delphi Exercise to Identify Items of Importance for Measuring Response to Treatment in ANCA-Associated Vasculitis
Data results from this VPPRN study have been published!
The purpose of this research project was to evaluate which measures are considered by patients and physicians to be most important when assessing response to treatment in ANCA-associated vasculitis. Patient participation and recruitment through the Vasculitis Patient-Powered Research Network (VPPRN) was critical to the success of this project. We found that while there was consensus between physicians and patients on many items, patients and physicians also differed on some areas. This study was important because these results directly informed the next steps in the development of new response criteria for use in clinical trials in ANCA-associated vasculitis.
VPPRN POSTER #6
Medication Interruptions and Subsequent Disease Flares During the COVID-19 Pandemic: A Longitudinal Online Study of Patients with Rheumatic Disease
Data results from this VPPRN study have been published!
Using the Vasculitis Patient-Powered Research Network (VPPRN) and partnering organizations, we received data from patients with vasculitis who completed baseline surveys between March 29 and June 30, 2020 and at least one follow-up survey through May 2021. We found that patients with vasculitis had high levels of anxiety at the start of the pandemic, but anxiety decreased close to general population averages by May of 2021. Our research showed that interruptions in medication use increased in 2021, but were more commonly recommended by physicians and may have been related to interruptions occurring around the time of vaccination. A substantial proportion of interruptions in medication use was not recommended by physicians, however, highlighting the importance of regular communication between the patients and the healthcare team during public health crises to ensure optimal use of medications.
VPPRN POSTER #7
VascSkin: Skin Vasculitis Quality of Life Survey
Data results from this VPPRN study have been published!
Skin involvement caused by vasculitis can be painful, burning, itching, and visible to others. Their impact on quality of life and well-being can be serious and is poorly understood by direct care providers.
Dr. Robert Micheletti, assistant professor of dermatology at the Hospital of the University of Pennsylvania, in partnership with the Vasculitis Patient-Powered Research Network (VPPRN), launched the VascSkin Study to better understand the impact of vasculitis-related skin involvement on patients’ quality of life.
190 adult patients in the VPPRN participated in this study. Based on the data collected using the Effects of Skin Disease on Quality of Life Survey (Skindex-29) and patient-reported data collected online from the VPPRN, we found that patients with skin manifestations of vasculitis have reduced scores in several measures of quality of life. These results suggest that skin vasculitis has a significant impact on health and well-being and a substantial impact on patients’ symptoms and self-perception of health.
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Role of the VPPRN and Lead Author Bio
