Sleep-Vasc: Quality of Sleep in Vasculitis Research Study
Sleep-Vasc: Quality of Sleep in Vasculitis Research Study
Patients with vasculitis often complain of difficulty with sleep and fatigue. Fatigue may lead to:
- decreased energy
- irritability
- problems focusing
All of these have negative effects on quality of life and physical and mental health.
Through this study, we hope to learn more about the quality of sleep of patients living with vasculitis. We aim to:
- understand factors contributing to both good and poor sleep habits
- decrease adverse effects linked to poor sleep
- identify ways to improve overall quality of life.
Click the above video to learn more about this study!
We need everyone to participate – whether you are a great sleeper or a poor sleeper or anything in-between, we want to hear from you.
Recruitment for this Study is Closed
About the VPPRN Sleep-Vasc Study
In patients with various types of vasculitis we aim to:
- Assess the proportion of patients with vasculitis with subjective daytime sleepiness and/or subjective associated functional impairment
- Determine the prevalence of risk of having obstructive sleep apnea (OSA)
- Identify modifiable factors (behavioral, co-morbid, vasculitis or medication-related) associated with disordered sleep
- Adult patients, or caregivers of adult patients, with ANY form of vasculitis
- 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 quality of sleep of patients living with vasculitis, help to identify factors associated with good and poor sleep quality, and determine factors potentially addressable through an intervention.
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 [email protected] with questions about the Sleep-Vasc study.
The Vasculitis Patient-Powered Research Network (VPPRN) is approved by the University of South Florida IRB Pro00018514.
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Molly Mason, Lead Patient-Partner
“I am excited to have the opportunity to help the Vasculitis community by participating as the lead patient partner in the Sleep-Vasc Study. Healthy sleep is important for all people but even more precious to a group of people who are fighting a rare disease that intensifies fatigue. I hope this study will help find a way to find more restorative rest that can provide more energy to improve quality of life.”
Meet the Study Team
Misa Tanaka
Master’s Student
Western University
(London, Ontario, Canada)
Lillian Barra, MD, MPH
Associate Professor of Medicine
Western University
(London, Ontario, Canada)
Indira Gurubhagavatula, MD, MPH
Attending Physician, Sleep Medicine
Hospital of the
University of Pennsylvania
(Philadelphia, PA, USA)
Christian Pagnoux, MD, MPH, MSc
Associate Professor of Medicine
University of Toronto
Mount Sinai Hospital
(Toronto, Ontario, Canada)
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.
