VPPRN V-SNIFF Study
Vasculitis Sino-Nasal Indicators For Flares (V-SNIFF)
CALLING ALL PATIENTS WITH EGPA, GPA, AND MPA! WE NEED YOU!
New VPPRN Study – Now Enrolling!
We want to know: Can the nose and sinuses help us understand ANCA-associated vasculitis?
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.
Participate in the V-SNIFF study! You can help us learn more sinus and nasal symptoms of vasculitis and help us improve overall quality of life for patients living with ANCA-associated vasculitis.
Whether you have a history of sinus or nasal disease or no history at all or anything in-between, we want to hear from you.
This study is open to members of the VPPRN only.
- Not a member? Click JOIN THE VPPRN button below to get started.
- Already a VPPRN Member? Click the LOGIN button to join the study.
About the V-SNIFF Study
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.
This study is open only to members of the Vasculitis Patient-Powered Research Network. If you are not yet a member, please join the VPPRN here then come back to join this study.
- Adult patients with ANCA-associated vasculitis (including EGPA, GPA, MPA)
- Individuals WITH or WITHOUT a history of sinus or nasal disease associated with their vasculitis
- All US and non-US based patients are eligible.
Participation is completely voluntary and all information you provide will be de-identified.
- The V-SNIFF study will last 2 years.
- If you choose to participate, we will ask you to complete questionnaires about yourself and your health every 3 months for a total of 2 years. Each will take approximately 10 minutes to complete.
- All of the questionnaires are available online. No travel is required.
The goal of this study is to understand the symptoms in the sinuses and nose in patients with ANCA-associated vasculitis. Prior research studies in our group have identified possible clues in the sinuses and nose which may help us understand vasculitis. By studying this in a larger group of patients, we hope to uncover the types of sinus and nasal symptoms that patients with vasculitis experience and how these symptoms relate to the disease and treatments.
There may be no direct benefits to you from taking part in this research.
However, your participation in this study may lead us to a better understanding of sinus and nasal symptoms of vasculitis and help us improve overall quality of life for patients living with ANCA-associated vasculitis.
Whether or not you take part in a research study is up to you. You can choose not to participate, or you can agree to take part and later change your mind. Your decision will not be held against you.
You can ask all the questions you want before you decide.
This study is open only to members of the Vasculitis Patient-Powered Research Network.
Our research team is here to make participation in this study easy for you.
The study coordinator is available for you to contact if you have any questions or concerns. Contact Christine Yeung from the Study Team at [email protected] with questions about the V-SNIFF study.
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.
Meet the Study Team
Mary Gibson – V-SNIFF Patient Research Partner
“In 2012, as an athletic and academically minded 21-year-old college student, I was diagnosed with ANCA-associated vasculitis (GPA) following prolonged severe pulmonary symptoms and received emergency care. I pursued treatment at the Cleveland Clinic and was in remission for short periods prior to 2 relapses. Due to the care of my specialists, I have been in remission for the last 10 years, with minimal lingering symptoms, and have been able to live an active and mostly normal life.
When I was initially diagnosed, I frantically looked for research, stories, or other informative articles from the VPPRN, Vasculitis Foundation and other scientific sources. The amount of research that has been put forth over the last decade has been inspiring in this aspect, but more research is needed to improve the outcome for those of us currently living with the disease and those who may be diagnosed in the future.
We have the opportunity to help others like us! By participating in this study, we hope to positively impact recovery and quality of life. Your feedback will help us identify ways to better serve the needs of the vasculitis community.”
Darrin White – V-SNIFF Patient Research Partner
“When I received my diagnosis of GPA in 2022, I finally had an answer that explained my symptoms, but that was only the beginning of my journey as a patient, and as a parent living with vasculitis.
Vasculitis has such a profound impact on our health, our quality of life, and on our relationships – the disease, the treatments, the worry, they all take a toll. I am not a doctor or a researcher, but I can take these opportunities, like participating in the VPPRN, to contribute to research that might help change the outcomes for all of us.
Please join me and participate in this study. This is our opportunity to help others in our vasculitis community. Together we can help move the science forward.”
Rennie Rhee, MD – V-SNIFF Principal Investigator
“As a rheumatologist focused on vasculitis, I have commonly heard these questions from patients with ANCA-associated vasculitis:
- I feel fine except my sinuses and nose still bother me. What does this mean and what can I do about this?
- How long do I need to stay on my vasculitis medications?
These questions along with our knowledge of the disease inspired the V-SNIFF study.
With your participation in our study, we may be able to provide better answers to these questions and transform the way in which we manage and treat vasculitis.”
Not a Member of the VPPRN?
If you aren’t a member of the Vasculitis Patient-Powered Research Network (VPPRN), we invite you to join today!
We want to understand your individual patient experience. We will learn about individual patient experiences by collecting data you provide. We’ve made it easy for you to contribute this data to make vasculitis research happen now.
Questions? Please contact Christine Yeung, the VPPRN Network Manager at [email protected].
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.
