VASCULITIS PATIENT-POWERED RESEARCH NETWORK (VPPRN)
RESEARCH PRIORITIZATION 2022 COMMUNITY POLL
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.
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
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.
#1 HIGHEST RATED
New Treatments and Medications
#2 HIGHEST RATED
Medication Use
Short & Long-Term Outcomes (Benefits & Complications)
#3 HIGHEST RATED
Environment Triggers
Related to vasculitis onset and/or flares
#4 HIGHEST RATED
Diagnostic Tools and Lab Tests
#5 HIGHEST RATED
Fatigue
And its Impact on Quality of Life
#6 HIGHEST RATED
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!
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
YOUR Data = NEW Research + NEW Treatments
The more people participate, the more data is available to help clinicians and researchers better understand 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!
