Name of VPPRN Research Study:
Clinical Characteristics and Reliability of a Self-Reported Diagnosis of Large-Vessel Vasculitis
Tell us about yourself, your research and why this interests you.
I am the Founder and Director of the multi-disciplinary Vasculitis Program at UCLA. My research interests are in large-vessel vasculitis and I have numerous publications related to my work in this field. I have been part of the VPPRN since 2014 and is current working with the VPPRN group to find novel ways to scientifically evaluate the data provided by our patients which will allow us to expand the use of such registries for future studies in vasculitis.
What’s been most rewarding to you as an investigator?
The discovery of new information that will directly impact patient care and further our understanding of the condition. Collaboration with other investigators in the field and being part of multicenter endeavors.
Obsessed with all things Harry Potter!
Why is your research important to patients?
Patient participation in research is important but research studies are often not accessible to patients who do not live near a study center. The Vasculitis Patient-Powered Research Network (VPPRN) allows participation by patients with vasculitis from across the world. Patients provide data about their diagnosis, symptoms, treatments, and disease activity. However, it is important to ensure that the data being collected by the VPPRN is of high quality. This study evaluated data provided by patients in the VPPRN with Takayasu’s arteritis and giant cell arteritis and found that the signs and symptoms of disease, blood and x-ray test results, and treatments are similar to what has been reported in studies in which data were collected by physician researchers through in-person visits. We also found that >90% of patients met established criteria/definitions established for these diagnosis. This project is part of a larger effort to validate the data within the VPPRN for each type of vasculitis.
How was the VPPRN used in your research study?
This research was conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team included a VPPRN Patient Research Partner (Dianne G. Shaw) who was helpful in the design of the survey and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN!
HUGE thank you to all of our VPPRN members! Your data makes research possible.
Congratulations again to all of our researchers and investigators for their hard work.