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The promise of better treatments for vasculitis has special meaning for Jason Springer, MD, MS, chair of the Vasculitis Foundation (VF) Research Committee and member of the VF Board of Directors. Before he ever started medical training, Dr. Springer’s father was diagnosed with vasculitis, a disease he had never heard of before. Despite treatment, his father passed away six months after his diagnosis.

“I am always amazed to think of the progress that has been made and the future ahead for the treatment of vasculitis,” said Dr. Springer, director of the University of Kansas Vasculitis Center and Assistant Professor in Allergy, Clinical Immunology and Rheumatology at the university’s medical center. “To think that some forms of vasculitis that used to be almost universally fatal are now treatable and can be managed as chronic diseases.”

As we prepared for this year’s Annual Appeal with our focus on better treatments, we conducted a Q&A with Dr. Springer about the challenges with today’s treatments for vasculitis, current  research being done to find better treatment options, and the VF’s role in supporting vasculitis research.

VF: What is the role of the VF Research Committee?

JS: The purpose of the committee is to promote research that has the potential to improve the quality of life for patients and families, with the ultimate goal of finding the causes and cure for the various forms of vasculitis. We critically evaluate research proposals, seeking expert opinion when necessary and ultimately provide recommendations to the board for grant applications submitted to the VF.

VF: What is the Research Committee currently focused on?

JS: We recognize the importance of supporting junior investigators in developing a career focused on vasculitis research. New this year will be a “Young Investigator Award” in memory of Dr. Christine Cox-Marinelli. Chris was a strong advocate for promoting the development of junior investigators toward a career in vasculitis. In addition, we hope to further develop the structure of the VF fellowship program, which provides trainees with both clinical and research experience in vasculitis.

VF: What does “better treatment” look like for patients?

JS: Multiple studies are under way to look at means to reduce or eliminate glucocorticoids (ie, steroids)—medications that can have numerous unwanted side effects. In the last decade, we have seen FDA approval of multiple pharmaceutical drugs for systemic vasculitis (eg, rituximab, mepolizumab, tocilizumab, apremilast). Approval of these medications has raised the enthusiasm of researchers and pharmaceutical companies to continue to look for new, better treatment options. We are in an exciting era with the potential to dramatically improve the quality of our treatments. This opens a new frontier in which we think beyond the mindset that steroids are a necessary part of the treatment of vasculitis.

VF: What are the main challenges with treatment today?

JS: Patients still deal with a plethora of medication side effects. Infection remains a major concern with almost all the current medications we use for vasculitis.

Another major challenge is the late diagnosis of some patients. While early signs of the disease can precede the diagnosis by years, the rarity of the diseases means many physicians are not familiar with them. Earlier diagnosis and treatment can help to prevent organ damage.

VF: What are the most important research studies taking place now or coming down the pipeline?

JS: One example is a study the VF helped fund, called, “Diagnostic and Classification Criteria for Vasculitis” or DCVAS. To my knowledge, this is the largest vasculitis study to date. It includes a total of 6,991 patients from 136 sites in 32 countries. One focus of the study is to give physicians better tools to diagnose vasculitis—hopefully leading to a shorter time to diagnosis and initiation of appropriate therapy for the patient.

VF: What are the main challenges for vasculitis research?

JS: These are rare diseases which can make it difficult to get enough participants to complete these studies. However, more vasculitis centers are collaborating, such as the Vasculitis Clinical Research Consortium (VCRC), to increase the number of participants. The Vasculitis Patient-Powered Research Network (VPPRN), a partnership of the VCRC and the VF, also offers a powerful tool to enhance participation in research. Through the VPPRN’s convenient online portal, patients and families can provide researchers a wealth of information through the surveys they complete—without having to live near a vasculitis center.

VF: Do you foresee funding for research getting better?

JS: One of the challenges for investigators is that there are few funding opportunities for vasculitis research. This can be especially challenging for junior investigators who have a lot of potential, but have a difficult time competing with more senior investigators for funding. The VF research grants serve an important role in providing the support vasculitis researchers need to get a project off the ground.

VF: What would the VF Research Committee do with a $5 million endowment?

JS: Wow! For one, we could develop different funding structures based on the level of the researcher. For instance, there are more established vasculitis researchers who have gathered a large amount of preliminary data and need more substantial funding. These projects can lead to breakthroughs.

In addition, it’s important to continue to support new vasculitis fellowships. The vasculitis fellowship has been a good investment for the VF, as these fellows go on to be good clinical vasculitis specialists, and many times open vasculitis centers and continue their vasculitis research throughout their career. I also feel it would be important to provide continued support for the VPPRN.

VF: What can the vasculitis community do to help?

JS: The vasculitis community has been so generous with their donations for vasculitis research that we have reached several milestones, including funding our 50th research study. I would like to see this reach 100. Patient and family participation in research studies, such as offered through the VPPRN, is also critical. To learn more about research opportunities, click here.

VF: Is there anything else you’d like to say about the VF?

JS: I have been on the board for four years now. It has been my privilege to see the VF, and the VF-supported research, grow during that time. Our research committee receives excellent grant applications from all over the world, many with the potential to make a significant impact on the lives of vasculitis patients. We are one of the largest private funders of vasculitis research.

I believe the vasculitis research community views the VF as a leader in research support, and we should continue to work toward our goal of finding the causes and cures for these devastating diseases.

Click here to watch a video with Dr. Springer and Dr. Peter Grayson discuss the future of vasculitis research.

Article by Nina Silberstein