VPPRN Patient-Powered Research - AAV Response Criteria
ANCA-Associated Vasculitis Response Criteria Delphi
Help us develop a tool for determining the efficacy of treatments for patients with vasculitis!
This survey is part of a larger project sponsored by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) to develop response criteria for ANCA-associated vasculitis (granulomatosis with polyangiitis and microscopic polyangiitis) for use in clinical studies/trials.
We are developing a research questionnaire as part of a larger project to develop response criteria for ANCA-associated vasculitis (AAV) for use in clinical studies / trials. We are looking for volunteers with granulomatosis with polyangiitis (GPA, formerly called Wegener’s) or microscopic polyangiitis (MPA) to complete this survey.
Recruitment for this Study is Closed
About the VPPRN AAV Response Criteria Study
To determine which measures, tools, or outcomes are considered by patients to be important when assessing treatment response in AAV.
Why am I being invited to take part in a research study?
We invite you to take part in a research study because you are a physician working with this disease or are a patient with ANCA-associated vasculitis.
Why is this research being done?
The purpose of this research project is to gather more information about this disease to develop response criteria for ANCA-associated vasculitis for use in clinical studies/trials.
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.
What happens if I say yes, I wat to be in this research? Is there any way being in this study could be bad for me?
For patients participating in this study you may be identified as a patient with ANCA-associated vasculitis if you choose to be listed by name in the published study as a contributor. This is an optional portion of the study and it is a decision that will be made by you before completion of the survey.
How long will the research last and what will I need to do?
We anticipate this survey taking approximately 20 minutes to complete. There will be 4 rounds of this survey. You will be asked to answer approximately 50 questions about your disease and a few basic demographic questions.
Will being in this study help me anyway?
There are no direct benefits to you from your taking part in this research. We cannot promise any benefits to others from your taking part in this research. However, possible benefits include improved testing of treatment for ANCA-associated vasculitis in the future.
What happens if I do not want to be in this research?
Participation in research is completely voluntary. You can decide to participate or not to participate.
This is an online research questionnaire. There will be 4 rounds of this questionnaire. Your email address will be collected for the purpose of determining who has completed the survey; for example, we will re-contact you to complete all rounds of the survey. However, your name will not be linked to any specific responses.
Those who complete all 4 rounds will have the option to choose if they would like to be listed by name in the published study as a contributor.
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.
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.
