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VPPRN Research Prioritization 2022 Community Poll

VPPRN Research Prioritization Community Poll

Below are the results from our 2022 survey.

As part of May’s Vasculitis Awareness Month, the Vasculitis Patient-Powered Research Network asked you to share which research areas you think are the most important, and boy did you tell us!

We received an incredible response from our Network community. A HUGE thank you to those for participating in this community poll and, more importantly, thank you for choosing to participate and stay engaged with the VPPRN.

Take a look at what you told us and in response, we want to tell you what the VPPRN has done, and is planning to do, in these areas.

Participant Breakdown

Number of Responses

1,036 Total Responses

Are you one of the more than 1,000 VPPRN members who participated in this community poll?  If so, thank you for sharing your data with us.

Geographic Breakdown

Global Response to the Survey!

Of the 1,036 who responded:
72% reside in the United States and 28% reside outside of the US

Gender Breakdown

Type of Vasculitis

Age of Participants

Here's What You Told Us

In this survey, we provided you with a list of research areas and we asked YOU to rank them by level of importance.

Can YOU guess the top 6 HIGHEST RATED research study ideas?  Simply turn the cards over below by hovering your mouse over each of them.

Take a look to see how your responses aligned with others in the VPPRN. For the complete list, please refer to the CONCLUSIONS section below.


New Treatments and Medications


Medication Use - Short & Long-Term Outcomes (Benefits & Complications)


Environment Triggers - Related to vasculitis onset and/or flares


Diagnostic Tools and Lab Tests


Fatigue and its Impact on Quality of Life


Journey to Diagnosis


It is great to hear what the VPPRN community considers the most important research areas.

What we found out is how closely aligned they are to the Network’s goals. At the VPPRN, we strive to find answers to the questions most important to patients living with vasculitis. We need feedback from the VPPRN community to help set our research priorities.

You’ve told us what your priorities are, and we hear you!

Want to know what the VPPRN is doing to directly address each of these research areas?  Keep an eye out for this information in future newsletters. Stay tuned.

Remember, your data is contributing to research. Research is key to better understand vasculitis and tailor treatment options across all vasculitis types and age groups. Your answers drive research. We cannot do our research without you!

VPPRN Research Areas Rankings

Research Area #1: New Treatments and Medications

Research Area #2: Medication Use – Short and Long-term Outcomes (Benefits and Complications)

Research Area #3: Potential Environmental Triggers for Vasculitis Onset and/or Flares

Research Area #4: Diagnostic Tools and Lab Tests

Research Area #5: Fatigue and its Impact on Quality of Life

Research Area #6: Journey to Diagnosis

Research Area #7: Role of Genetics in Vasculitis

Research Area #8: Complementary and Alternative Therapies

Research Area #9: Pain

Research Area #10: Sleep

Research Area #11: COVID-related

Research Area #12: Employment and Vasculitis

Thank You!

Thank you to all 1,036 VPPRN members who participated in this poll!  We appreciate your enthusiasm and continued engagement with the VPPRN!

YOUR Data = NEW Research + NEW Treatments

The more people participate, the more data is available to help clinicians and researchers better understand vasculitis.


Christine Yeung, our Network Manager is here to help. Email, call or text at any time and we can provide the assistance you need.

Email: [email protected] or [email protected]
Mobile: (215) 200-6147
Business hours: Monday-Friday between 8AM-5PM ET