VPPRN Exercise in TAK Study
EXERT Study (EXERcise in TAK)
Take part in the first VPPRN study focused on Takayasu's arteritis!
We want to know: Can exercise help your TAK?
How exercise impacts cardiovascular health is unknown.
Currently, there are no specific guidelines regarding optimal exercise routines for patients living with Takayasu’s Arteritis (TAK). Similarly, current exercise practices among patients with TAK have not been well defined.
We need you! Participate in this study and you can help us gain a deeper understanding of the exercise practices in patients with Takayasu’s arteritis.
We want to hear from everyone!
- Whether you exercise a little, a lot, or not at all
- Whether you experience any pain or discomfort (such as arm claudication) or none at all
Your participation matters! By sharing your exercise habits, you can help us understand how different activities may impact your symptoms of vasculitis.
This study is open to members of the VPPRN only.
Not a member yet? No problem! You can still take part in the EXERT survey! After you complete the survey, click the “Join the VPPRN” button below to become part of our online patient research registry and get involved!
About the VPPRN Exercise in TAK Study
Through this study, we hope to gain a deeper understanding of the exercise practices and the occurrence of arm claudication in patients with Takayasu’s arteritis (TAK). We aim to:
- Describe the exercise habits of patients with TAK including frequency of exercise, exercise type, and barriers to exercise
- Explain the different symptoms and challenges related to arm claudication
- Discuss strategies or techniques that may help mitigate arm discomfort or pain
- Adult patients living with Takayasu’s arteritis (TAK)
- Individuals who exercise A LOT or SOME or NONE AT ALL – we want everyone to participate!
- All US and non-US residents are eligible
- This study is open only to members of the Vasculitis Patient-Powered Research Network.
- Participation is completely voluntary and all information you provide will be de-identified.
- We ask that you complete 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.
- The questionnaire is available online. No travel is required.
There are no specific consensus guideline recommendations regarding optimal exercise regimens in patients with Takayasu’s arteritis (TAK). Current exercise practices among patients with TAK have similarly not been well defined.
By evaluating current exercise practices including frequency of exercise, exercise type, any barriers to exercise, and whether any recommendations for/against exercise were provided by providers, we hope to answer our study question: can exercise help your TAK?
There may be no direct benefits to you from taking part in this research.
However, your participation in this study may lead to a better understanding of the exercise habits among patients living with TAK, help to identify potential barriers to exercise, and learn how exercise impacts arm claudication.
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 current 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 christine.yeung@pennmedicine.upenn.edu 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
Katrina Bargender – Lead Patient Research Partner
“In 2016, after waking up in the middle of the night unable to see out of my left eye and a subsequent weeklong hospitalization at my local children’s hospital, I was diagnosed with Takayasu arteritis at the age of 14. Despite a complex medical journey over the past many years, I recently graduated from college with my bachelor’s degree in biomedical science. I plan to pursue a PhD in biostatistics to contribute to a cure for vasculitis.
Although the damage to my arteries is permanent, I continue to hope for a reduction in my claudication symptoms and improvement in my quality of life. I have chosen to participate as a patient research partner for this study to help explore the benefits of exercise for patients living with Takayasu arteritis. I hope that the results of this study will encourage doctors to recommend exercise to patients with Takayasu arteritis resulting in improvements in physical health, mental health, and quality of life.
I participate in the VPPRN to help doctors better understand the individual journeys of patients living with vasculitis. I hope you will join me in discovering how exercise impacts the lives of patients living with Takayasu arteritis.”
Kaitlin Quinn, MD – Principal Investigator
“I work as a rheumatologist at the National Institutes of Health in Bethesda, Maryland. Our group has a longstanding interest in caring for patients with Takayasu’s arteritis and conduct a range of studies to understand what causes this disease.
We are frequently asked by patients with vasculitis about the safety and potential benefits of exercise, but we do not currently have any guidelines about exercise in patients with Takayasu’s arteritis. We hope to learn more about current exercise practices among patients with Takayasu’s arteritis and how exercise may impact symptoms of the disease. Your participation in this study can lead to better informed recommendations about exercise for patients with Takayasu’s arteritis and will help our group to plan future exercise interventional studies in 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 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.
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