Pediatric Vasculitis Registry
VASCULITIS PATIENT-POWERED RESEARCH NETWORK
Be a part of the first pediatric research network for vasculitis!
The Vasculitis Patient-Powered Research Network’s Pediatric Vasculitis Registry (PedsVPPRN) is an international, online platform where families and patients can participate in research by answering questionnaires about their experience with vasculitis.
We want to explore how vasculitis impacts children’s quality of life, what barriers they face in accessing care and attending school, how medications affect their health, and much more.
Who can join?
- Any parent/guardian or caretaker of a child with vasculitis
- You must also have regular access to the internet and are comfortable reading English.
Join the PedsVPPRN in 3 simple steps
Your insights will help shape the future. Sign up today!
SIGN UP
ONLINE
Click the JOIN THE PEDSVPPRN
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COMPLETE QUESTIONNAIRES
Advance understanding in vasculitis at the convenience of your home
MAKE A
DIFFERENCE
Share your experience today, help families of tomorrow
The Vasculitis Patient-Powered Research Network (VPPRN) is approved by the University of South Florida IRB Pro00018514.
Click HERE to learn more about our VPPRN Privacy Pledge.
Want to learn more? Visit our VPPRN homepage or FAQs.
Meet the Study Team
Katrina Bargender – PedsVPPRN Patient Research Partner
“I was diagnosed with vasculitis, specifically Takayasu’s arteritis, at the age of 14 after losing the vision in my left eye. I received my diagnosis of vasculitis at my local children’s hospital, and I was treated there until I transitioned to seeing adult providers at the age of 19. I missed a lot of high school due to symptoms of my disease, but I was able to attend college, and I recently graduated with my bachelor’s degree in biomedical science.
I chose to become a patient research partner to expand patient powered research to include the experiences of children and teens with vasculitis and their parents. By participating in the pediatric vasculitis registry, you can help doctors understand how vasculitis affects children differently than adults so that guidelines can be developed specifically for children with vasculitis in areas such as medication dosing and duration and risk of relapse and recurrence of disease. Your participation will also allow us to better understand the impact of vasculitis on school and quality of life in children. Please join me in advancing pediatric vasculitis research today!”
Amy and Ben Bolton – PedsVPPRN Patient Research Partners
“In 2021, my then 10 year old son Ben started experiencing joint pain and feeling unwell. Lab results indicated that Ben was in kidney failure. He started dialysis and was soon diagnosed with ANCA Vasculitis, (GPA). In May of 2022 Ben had a successful kidney transplant. Ben continues to be a typical kid that is monitored closely by an amazing team of medical professionals.
I am a mom of two teenagers. I have also been a public school counselor for 23 years. I decided to become a patient research partner when I learned about my son’s rare disease. I was thrilled to discover the VPPRN and felt a calling to support research. We all belong to this unique and small community. I believe patients and their loved ones are the experts of this disease. Working with medical professionals and sharing our stories is the most important thing we can do to support research and find a cure for vasculitis.”
Jessica L. Bloom, MD, MSCS – PedsVPPRN Lead Investigator
“I am a Pediatric Rheumatologist at Children’s Hospital Colorado and Assistant Professor of Pediatrics at the University of Colorado. I see children from all over the mountain west and beyond with rheumatic diseases, and have built a special interest in vasculitis. After completing the Vasculitis Clinical Research Consortium-Vasculitis Foundation Vasculitis Fellowship, I knew that I wanted to dedicate my research career to children with vasculitis.
In creating the Pediatric Registry of the VPPRN, I hope to better understand the physical, emotional, and social impacts of vasculitis on children. I want to be able to answer questions for my patients not just from a textbook, but from the community itself – and, to ask the questions they want answered. I’ve met the families who attend the Vasculitis Foundation’s patient conferences and seen those who come through our clinic – many are eager to help and all of them have insight to share. No one understands living with vasculitis more than the patients themselves.”
Karen E. James, MD, MSCE – PedsVPPRN Lead Investigator
“I am a pediatric rheumatologist in Salt Lake City with the University of Utah and Primary Children’s Hospital. I take care of children with vasculitis from Utah, Idaho, Nevada, Wyoming, and Montana, and have dedicated my research career to children with vasculitis.
The creation of the Pediatric Registry of the VPPRN is a key step forward in improving outcomes for children with vasculitis. Vasculitis affects not just physical health, but all aspects of a child’s life, from school to family life. The Pediatric VPPRN will allow us to hear directly from both children and their families on how vasculitis impacts their lives. I am excited to be able to use this registry to work with the vasculitis community on developing research studies to answer the questions most important to them.”
Questions?
Please contact Christine Yeung, the VPPRN Network Manager at christine.yeung@pennmedicine.upenn.edu.
Interested in Other Research Opportunities?
The goal of the VPPRN research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.
Learn about current opportunities to participate in research.