Dorothy Flood
VPPRN GCA Patient-Partner and Patient Champion
Why do I participate in research?
“I have spent my career working in biomedical and pharmaceutical research on neurological and psychiatric disorders, some rare diseases. From this, I learned the importance of patient advocacy groups in promoting research on etiology and therapies, as well as their importance in patient support. As a sufferer of temporal arteritis (giant cell arteritis), I sought out VPPRN early in my diagnosis to participate in their support efforts and research initiatives in order to further my understanding of the disease and to assist as a patient in research.
By participating in the VPPRN, I know that I am providing practitioners with data so they can better understand vasculitis to improve my life and the lives of everyone touched by vasculitis. Please join me in making a difference.”
-Dorothy Flood
BETTER STUDIES | BETTER ANSWERS | BECAUSE OF YOU
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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 Ta
- Individuals with EITHER good or poor sleeping habits
- 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.
Current treatments have significantly increased survival rates of patients with vasculitis. As a result, the improvement of health-related quality of life (HRQoL) has become a key issue.
The main contributors to poor HRQoL include fatigue and difficulty sleeping, which affect pain, mental well-being, and cardiovascular risk. Studying sleep in patients with vasculitis and understanding factors contributing to poor sleep could improve HRQoL if they are identified early and managed. These are unmet needs that require further research.
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.
