VPPRN Research Poster Gallery | RESEARCH IN ACTION
The Vasculitis Patient-Powered Research Network (VPPRN) is proud to present this poster gallery to not only showcase the breadth of research of the VPPRN, but the vital role our Network members play in the design and execution of these studies.
In this gallery, you will find:
- an overview of the current research from experts in the field using VPPRN data, and
- insight from our lead authors as to why the study is important to members of the VPPRN.
It is because of the continued participation and engagement of our VPPRN members that research studies like these are possible.
Data drives research & we cannot do research without our VPPRN members! For that, we thank our Network!
GUIDED TOUR OF THE POSTER GALLERY
Watch Michael Putman, MD, MSCI from the Medical College of Wisconsin on this tour! He leads us through the gallery by providing an overview of the posters and discussing the impact of Network member engagement in the research of the Vasculitis Patient-Powered Research Network.
VPPRN Poster #1
To elicit patient preferences regarding the use of plasma exchange (a procedure in which the blood is processed by a machine and antibodies are removed) in ANCA-associated vasculitis (AAV) and its tradeoffs of end stage kidney disease (ESKD) and serious infection in an international online survey of adults with AAV.
VPPRN Poster #2
To assess among patients with vasculitis trends in anxiety and interruptions in use of immunosuppression drugs during the COVID-19 pandemic and evaluate reasons for such medication interruptions.
VPPRN Poster #3
To compare the clinical characteristics and determine the reliability of a self-reported diagnosis of giant cell arteritis (GCA) or Takayasu’s arteritis (TAK) in an international, internet-based cohort.
VPPRN Poster #4
Cutaneous manifestations of vasculitis may cause itching, pain, and ulceration, while psychosocial effects may be significant. Yet, the quality-of-life (QoL) impact of skin vasculitis has not been systemically evaluated. Prior work on other skin diseases (e.g., chronic urticaria, psoriasis, hidradenitis suppurativa) demonstrate significant effects on QoL.
This study assessed the quality-of-life of patients with cutaneous manifestations of vasculitis and evaluated factors affecting the patient experience.
VPPRN Poster #5
Relapses are common in vasculitis and preventing relapses is a goal of treatment. It is unknown to what degree patients value relapse avoidance and how much risk they are willing to accept to avoid relapses. With patient partners we designed, piloted, and administered a survey called the Vasculitis: Effects of Remission Maintenance Therapy on Relapse and Side Effects: Patient Preferences (VERITAS).
VPPRN Poster #6
To reach consensus about measures considered by patients and physicians to be most important when assessing response to treatment in AAV.
VPPRN Poster #7
Describe an internet-based cohort of participants with a self-reported diagnosis of PAN and determine how many met established criteria for PAN.
Who made this research possible? VPPRN MEMBERS!
It is because of the continued participation and engagement of our Network members that research studies like these are possible.
The more people participate, the more data is available to help clinicians and researchers better understand vasculitis.
Data drives research! We cannot do this without the participation of our Network members!
Not a VPPRN member, click HERE to learn more