Vasculitis Strength Study (VascStrong)

Patients with vasculitis endure and survive very difficult physical, emotional, and social consequences. This study intends to investigate how patients’ physical transformations have changed since the onset of vasculitis.
Due to age or our chronic health conditions, some people experience a physiological decline, a decrease in the ability to “bounce back” from stressors. This change can lead to increased vulnerability to adverse health outcomes. In the medical literature, this process is called frailty.
This study aims to describe the prevalence of common health conditions associated with frailty in patients living with vasculitis and describe its impact on health-related quality of life and clinical outcomes.
The Principal Investigator for this study is Sebastian Sattui Cortes MD. Dr. Sattui was a 2019 VCRC-VF Fellow.

Hear from Dr. Sebastian Sattui provide information about the study.

Lead Patient Partner, John

This study will lead to a better understanding of:
    • the impact of preserving strength.
    • avoiding the consequences of frailty on patients living with vasculitis.
    • identify potential risk factors associated to its development.
    • generate knowledge to the development of measures to prevent it.

“My choice to lead the VasStrong study was quite easy since I have limitations from the disease that affect my daily activities and ability to live an active life.  I hope this study will uncover information on frailty that leads to the minimization of frailty and treatments that reduce the impact of frailty on vasculitis patients.”

Lead Patient-Partner John Stadler

about the study title block

Aims of the Study

  • To describe the prevalence of frailty in patients living with vasculitis.
  • To determine the factors associated with frailty in patients living with vasculitis.
  • To describe the association between health-related quality of life and frailty status in patients living with vasculitis.

Key Information

Why is this research being done?

Despite the growing evidence, there is little information regarding the prevalence and impact in patients with systemic vasculitis. Patients with systemic vasculitis represent a population where the process of frailty might be accelerated (age group, chronic inflammation, high burden of comorbidities) and have significant clinical implications. Moreover, since steroids continue to be the mainstay of medical management for some of these conditions, frailty could not only be exacerbated by the disease itself but also by the therapeutic interventions.

What should I know about a research study?

  • Whether or not you take part is up to you.
  • You can choose not to take part.
  • 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.

Who can join the study?

All adult VPPRN members will be eligible for the study. All vasculitis diagnosis, including diagnosis of relapsing polychondritis, will be eligible for this study.

Will being in this study help me anyway?

There may be no direct benefits to you from your taking part in this research. However, participation in this study will lead to a better understanding of the impact of frailty in patients living with vasculitis, identify potential risk factors associated to its development and generate knowledge to the development of measures to prevent it.

Not a member of the VPPRN yet?

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.

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.

Questions and Study Contact

Please note, 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 Study Team at [email protected] if you have questions about the study.