VPPRN PRO-TOOTH-VASC Study
Patient-Reported Outcomes and Oral Health in Patients with Vasculitis (PRO-TOOTH-VASC)
CALLING ALL ADULT PATIENTS WITH VASCULITIS! WE NEED YOU!
New VPPRN Study – Now Enrolling!
How does oral health affect day-to-day life for people living with vasculitis?
Oral health is often an overlooked issue for people living with vasculitis. Some types of vasculitis can affect the mouth, causing symptoms such as painful gums, mouth sores, or swelling of the salivary glands. Medications used to treat vasculitis, such as glucocorticoids (or “steroids”) and other immune-suppressing drugs, can also increase the risk of mouth infections, cavities, and other dental problems.
Oral and dental problems can affect day-to-day wellbeing, but these connections have not been well studied in people with vasculitis. That’s why we are launching a new VPPRN study focused on oral and dental health.
The Patient-Reported Outcomes and Oral Health in Patients with Vasculitis (PRO-TOOTH-VASC) study aims to learn more about how oral health impacts daily life.
We want to hear from everyone – whether you have had oral or dental health issues in the past, are experiencing them now, or have never had any. Every perspective counts.
How can I participate?
This study is open to adult patients who are members of the VPPRN.
- Already a member?
- Check your email for the study invitation and survey link.
- Not a member yet?
- Click the JOIN THE VPPRN button below to sign up.
- Once you join and complete your registration forms, you’ll receive the link to participate in the PRO-TOOTH-VASC study.
About the PRO-TOOTH-VASC Study
Through this study, we aim to improve our understanding of oral and dental health among patients with vasculitis, specifically its impact on quality of life, the potential interactions between disease activity and its manifestations, and the effects of glucocorticoid use.
This study is open only to members of the Vasculitis Patient-Powered Research Network.
- Adult patients with ANY form of vasculitis
- Individuals WITH or WITHOUT a history of oral or dental issues
- All US and non-US based patients are eligible.
- Participation is completely voluntary and all information you provide will be de-identified.
If you meet the above eligibility criteria, but are not a VPPRN member, let’s change that!
- Join the VPPRN here.
- Once you join and complete your registration forms, you’ll receive the link to participate in the PRO-TOOTH-VASC study.
- The PRO-TOOTH-VASC study survey is a one-time questionnaire about yourself and your health. The questionnaire will take approximately 10-20 minutes to complete.
- We may contact you regarding your responses to the questions for additional clarification or to address any gaps in data.
- All of the questionnaires are available online. No travel is required.
The goal of this study is to understand how oral health impacts day-to-day life for people living with vasculitis.
Oral health is an important but often overlooked part of living with vasculitis.
What we know:
- Vasculitis can affect the mouth. Some people develop mouth sores, gum irritation, mouth pain, or swollen salivary glands.
- Vasculitis and its treatments can raise oral health risks. Medicines like “steroids” and other immune-suppressing drugs can make infections, cavities, and other dental problems more likely.
What we still need to learn:
- How oral health affects overall quality of life for people with vasculitis. This connection hasn’t been well studied.
Prior research studies have not well-described or quantified general oral and dental manifestations, and related oral health problems in patients with vasculitis.
By studying this in the VPPRN, we hope to better understand oral and dental health in people with vasculitis. By asking people with vasculitis directly to share their experiences, positive or negative, we hope to learn more about oral health problems, how they affect daily life, how they relate to vasculitis symptoms, and how treatments such as steroids may play a role.
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 improve our understanding of oral and dental health among patients with vasculitis, specifically its impact on quality of life, the potential interactions between disease activity and its manifestations, and the effects of glucocorticoid use.
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 to adult 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 the PRO-TOOTH-VASC Study Team at support@vpprn.org with your questions.
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
Marcia Brown
-PRO-TOOTH-VASC Patient Research Partner
“For many years, I felt like I was the only person living with this disease. There wasn’t much information available, and it could feel very isolating.
Nearly 20 years later, I’ve learned that I’m not alone. There is a strong and growing community of people living with vasculitis. That progress has happened because of research. The more researchers learn, the better they can understand the disease and improve care for people like us. That’s why I choose to take part in research—and why I encourage you to consider participating too.
The PRO-TOOTH-VASC study looks at the connection between vasculitis and oral health. The mouth can sometimes be an entry point for bacteria, and oral health is about much more than having a bright smile. Because vasculitis involves inflammation of the blood vessels, even small gum infections may affect overall health.
We have the opportunity to help others like us! By participating in the PRO-TOOTH-VASC, you can help researchers learn more about how oral health may relate to vasculitis and contribute to better care for patients in the future. Your feedback will help us identify ways to better serve the needs of the vasculitis community.”
Pauline Sanders
-PRO-TOOTH-VASC Patient Research Partner
“After several years of unexplained health issues, I was diagnosed in 2018 with Granulomatosis with Polyangiitis (GPA), a rare form of vasculitis. Hearing those words was overwhelming, but that diagnosis set me on a journey to better understand my disease and advocate for greater awareness and research.
The PRO-TOOTH-VASC study is focused on understanding the oral health challenges faced by people living with vasculitis—issues that are common but often under-recognized.
By sharing your patient perspectives and experiences, you can help researchers learn more about challenges we face and how oral health impacts our overall well-being.
Your participation helps secure that patient perspective, guides future research and contributes to meaningful improvements in care for our community.
Please join me and participate in this study.
When we engage in research, we help ensure that patients’ voices are heard. Together, we can turn resilience into progress and awareness into action-building a better future for everyone affected by vasculitis.”
Jaume Mestre-Torres, MD
-PRO-TOOTH-VASC Principal Investigator
“In this study, we want to know: How oral and dental symptoms impact quality of life in patients living with vasculitis?
Vasculitis and their treatment are known to cause oral and dental problems. Oral involvement has been associated with an impairment of the quality of life. In a preliminary study it was seen that oral and dental symptoms in patients with vasculitis can lead to a poorer quality of life.
The PRO-TOOTH-VASC study aims to learn more about how oral and dental symptoms impact patients living with vasculitis and relate to treatment and relapse or flares of the disease.
Please consider participating in the PRO-TOOTH-VASC study.
With your help, we can learn more about oral symptoms, how they impact your quality of life and how they are associated with other manifestations of vasculitis.”
Christian Pagnoux, MD, MPH, PhD
-PRO-TOOTH-VASC Principal Investigator
“Autoimmune diseases and the medications used to treat them can affect oral and dental health. At the same time, dental problems can impact overall health, disease activity, and quality of life for people living with vasculitis.
This connection is already well recognized in other autoimmune diseases such as rheumatoid arthritis and Sjögren’s syndrome. However, much less is known about how oral health affects people with vasculitis.
Some of our patients with vasculitis have experienced serious dental problems, which raised important questions. When we looked for research on oral and dental health in vasculitis, we found that very little information exists. This study was created to help fill that gap.
Doctors do not often ask patients with vasculitis about their dental health. By completing this survey, you can help researchers better understand possible links between vasculitis and oral health. Your participation may help guide future research and improve care for people living with vasculitis. Please consider participating in the PRO-TOOTH-VASC study.”
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 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.