The VPPRN Research Team is relentlessly exploring every aspect of vasculitis — from the journey to diagnosis to quality of life to clinical trials of new treatments and population-wide studies of the disease. Our core mission is to translate this knowledge into new strategies to improve the lives of patients. Our Research Teams are making scientific progress and gaining an improved understanding of vasculitis.
None of this could be accomplished without our patient community. Thank YOU to all of our participants for making these research discoveries possible.
Below are some of our VPPRN discoveries and advances in vasculitis research and understanding. Keep checking back for new updates and study summaries.
VPPRN Publications and Research Discoveries
Accuracy of Self-Reported Diagnosis of Antineutrophil Cytoplasmic Antibody-Associated Vasculitis
To determine the reliability of self-reported diagnosis of antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis: granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), and eosinophilic granulomatosis with polyangiitis (EGPA) from a large, international, internet-based cohort.
Patient self-report of a diagnosis of ANCA-associated vasculitis is reliable with 86-96% of patients fulfilling the ACR criteria or CHCC definitions for their disease. Additional confirmation of the findings using medical records is currently underway. These results strongly support the reliability of using online, patient-generated data for clinical and epidemiological research in ANCA-associated vasculitis. READ MORE
Data from healthcare systems, patients and communities, and health plans can support health research. Two types of data sources are:
- Patient-powered research networks, or PPRNs. In PPRNs, patients, families, caregivers, and community members share health data with the network. They work closely with researchers to plan and conduct research.
- Health plan research networks, or HPRNs. In HPRNs, networks of health plans have access to health claims data from members for research.
To link records, researchers use computer programs to connect the records of people in a PPRN with their claims data in an HPRN. Current methods to link records require use of personal information, such as names and dates of birth. But patients may not want to share this information. In this project, the research team developed method for linking data from PPRNs and HPRNs without using patients’ personal information. READ MORE
The Vasculitis Pregnancy Registry (VPREG): Baseline information for the first 3 years
The Vasculitis Pregnancy Registry (VPreg) is an online, patient-driven prospective pregnancy registry that is designed to collect observational data to increase our understanding of pregnancies in women with vasculitis.
Between 11/2015-12/2018 62 pregnant women with a range of vasculitis diagnoses enrolled in VPreg. Almost all (95%) had been diagnosed with vasculitis prior to conception and 67% had been hospitalized for vasculitis at some point. READ MORE
Comparison of Patient Self-reported Data to Physician-driven Cohorts in Patients with Eosinophilic Granulomatosis with Polyangiitis
Aligning views of patients and physicians in the diagnosis and management of diseases is imperative, particularly in rare, chronic diseases such as vasculitis. The aim of this study was to compare the patient-reported vs. physician-reported symptoms, treatments, and outcomes in patients with eosinophilic granulomatosis with polyangiitis (EGPA). READ MORE
Diagnostic delays in vasculitis and factors associated with time to diagnosis
This patient-centric study of patients with vasculitis demonstrated that misdiagnosis and delays in diagnosis of vasculitis are quite common and identified several important clinical and health system factors associated with delays in diagnosis. The results of this study could lead to improved strategies to address diagnostic delays in vasculitis. READ MORE
The Cumulative Burden of Damage for Patients with Eosinophilic Granulomatosis with Polyangiitis
This study aimed at describing damage in patients with EGPA enrolled in the Vasculitis Clinical Research Consortium (VCRC) from 2003 – 2019. The term “damage” in this study means any aspect of chronic disease that cannot be reversed with therapy.
Patients with EGPA endure considerable damage from the disease and disease treatment, even several years after diagnosis. The data shows the significant need for finding more effective and safer treatments for EGPA, especially those that limit the use of steroids.
This project examined the recently formed Vasculitis Patient-Powered Research Network (VPPRN) to better understand what investigators and patients learned from working on research teams together.
Direct engagement in research design and development by patient- partners and co-learning between investigators and patient-partners can result in a positive and productive working relationship for all members of a medical research team. This bi-directional engagement directly benefits and impacts research design, participant recruitment to studies, and study subject retention. READ MORE
Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
Developed and validated a questionnaire to assess quality of life in patients with ANCA-associated vasculitis (AAV). Patients with AAV have inflammation in the small blood vessels leading to involvement of a range of organs, for example kidneys, lungs and skin. Patients can suffer from ongoing disease activity or treatment side effects.
Quality of life can be measured by patient reported outcome measures (PROMs). This project developed a disease specific PROM for patients with AAV. READ MORE
VASC WORK STUDY: IMPACT OF VASCULITIS ON EMPLOYMENT AND INCOME: AN ONLINE SURVEY OF PARTICIPANTS IN THE RARE DISEASES CLINICAL RESEARCH NETWORK – VASCULITIS CLINICAL RESEARCH CONSORTIUM PATIENT CONTACT REGISTRY
Work disability associated with rheumatic diseases accounts for a substantial financial burden. However, few studies have investigated disability among patients with vasculitis.
The purpose of this study was to examine the impact of vasculitis on patient employment and
income. READ MORE
DEVELOPMENT AND VALIDATION OF CASE-FINDING ALGORITHMS FOR THE IDENTIFICATION OF PATIENTS WITH ANTI-NEUTROPHIL CYTOPLASMIC ANTIBODY-ASSOCIATED VASCULITIS IN LARGE HEALTHCARE ADMINISTRATIVE DATABASES
The aim of this study was to develop and validate case-finding algorithms for granulomatosis with polyangiitis (Wegener’s, GPA), microscopic polyangiitis (MPA), and eosinophilic GPA (Churg-Strauss, EGPA). READ MORE