Name of VPPRN Research Study:
An International Delphi Exercise to Identify Items of Importance for Measuring Response in ANCA-associated Vasculitis
Tell us about yourself, your research and why this interests you.
This research project was an international survey among patients with ANCA-associated vasculitis and physicians with expertise in ANCA-associated vasculitis. The goal was to evaluate which measures are considered to be most important when assessing response to treatment in clinical trials in ANCA-associated vasculitis. This survey is part of a larger project to develop new response criteria in ANCA-associated vasculitis, which we envision will be a key aspect to the conduct of future clinical trials, with the hope of discovering the best treatments for vasculitis.
What’s been most rewarding to you as an investigator?
This project has been a major collaborative effort and it has been rewarding to have the opportunity to work with many investigators in vasculitis and patients with vasculitis from all over the world.
I played soccer in high school and my team won the Connecticut state championship.
Why is your research important to patients?
The purpose of this research project was to evaluate which measures are considered by patients and physicians to be most important when assessing response to treatment in ANCA-associated vasculitis. Patient participation and recruitment through the Vasculitis Patient-Powered Research Network (VPPRN) was critical to the success of this project. We found that while there was consensus between physicians and patients on many items, patients and physicians also differed on some areas. This study was important because these results directly informed the next steps in the development of new response criteria for use in clinical trials in ANCA-associated vasculitis.
How was the VPPRN used in your research study?
This research was conducted through the VPPRN and demonstrates the efficiency and power of working with an engaged group of patients to advance research. The project team included a VPPRN Patient Research Partners (Georgia Lanier and Maria Bjork Vidars-Dottir) who was helpful in the design of the survey and interpretation of the results.
This study would not have been possible without the participation of members of the VPPRN. As a result of their participation, we are able to execute research studies like this that provide researchers with tools to improve clinical trials and ultimately advance care and outcomes for patients with vasculitis.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN!
HUGE thank you to all of our VPPRN members! Your data makes research possible.
Congratulations again to all of our researchers and investigators for their hard work.