Help develop a testing tool

In News by John Geddes

EULAR and ARC are conducting research to develop a tool for determining the efficiency of treatments for patients with Vasculitis.

They are looking for people who have AAV Vasculitis Granulomatosis with Polyangiitis and Microscopic Polyangiitis.

Aim of the Study

To determine which measures, tools, or outcomes are considered by patients to be important when assessing treatment response in AAV.

Key Information

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 want 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.

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.

Interested? More details here.