Name of VPPRN Research Study:
Description of an Internet-Based Cohort with a Self-Reported Diagnosis of Polyarteritis Nodosa
Tell us about yourself, your research and why this interests you.
Our research utilizes an important database, namely the Vasculitis Patient Powered Research Network. Through this database we collect information directly from participants with various forms of vasculitis from around the world. This abstract was focused on the diagnostic validation and description of a cohort of patients with polyarteritis nodosa. By validating the database, we hope this will lead to other future studies utilizing this important resource.
What’s been most rewarding to you as an investigator?
I find it rewarding to be involved in studies which have the potential to have large impacts on the vasculitis community. I also enjoy the team, made up of both investigators and patient partners, that I have had the honor to work with.
Since the onset of the COVID pandemic I have developed a new hobby… astrophotography.
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. Polyarteritis nodosa (PAN) is an exceedingly rare disease, and as such it difficult to do traditional center-based research. This study evaluated data provided by patients in the VPPRN with PAN 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. These results are quite important and highlight that the VPPRN online registry provides a feasible and cost-effective method of conducting research by directly engaging patients. This project is part of a larger effort to validate the data within the VPPRN for each type of vasculitis.
The VPPRN is a unique resource which allowed us to work with an international cohort of patients with PAN, giving us enough of a sample to have meaningful results.
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.