In This Article
- Vasculitis is a group of rare rheumatic diseases that cause inflammation of the blood vessels, which can restrict blood flow and lead to tissue and organ damage
- The Rheumatology Vasculitis Program at Massachusetts General Hospital was developed to care for patients across the disease spectrum and provide a platform for vasculitis research and education
- In partnership with the Vasculitis Foundation, the program hosted a new Vasculitis Patient Conference to educate patients with vasculitis and provide them an opportunity to meet other patients and providers
- In this Q&A, Program Co-Directors Sebastian Unizony, MD, and Zachary S. Wallace, MD, MSc, discuss the goals of the conference and how their research advances vasculitis care
Vasculitides are rare rheumatic diseases that affect the blood vessels, causing inflammation that can restrict blood flow and lead to tissue and organ damage. There are various forms of vasculitis, such as giant cell arteritis, Takayasu's arteritis, anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis, and Behcet's Disease, among several others. Each vasculitis requires a personalized treatment plan.
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The Vasculitis Program within the Rheumatology Unit at Massachusetts General Hospital provides individualized expert care to patients and conducts cutting-edge research across the wide spectrum of vasculitis. In this Q&A, Co-Directors Sebastian Unizony, MD, and Zachary S. Wallace, MD, MSc, discuss their program and research, as well as their new Vasculitis Patient Conference in partnership with the Vasculitis Foundation, which brought patients with vasculitis together to discuss treatments, recent advances in the field, patient support resources, and more.
Q: What is the Rheumatology Vasculitis Program, and why was it established?
A large portion of patients who receive care at Mass General and Brigham and Women's Hospital have many different types of vasculitis, and each day these patients from across the country and even around the world are seen in our Mass General Brigham community. We felt it was important to connect these patients with providers who have tremendous expertise across the spectrum of vasculitis. By formalizing the Rheumatology Vasculitis Program, we can establish ourselves and get our name out there as a place clinicians and patients think of when there is concern for vasculitis.
The Rheumatology Vasculitis Program has four objectives: to provide excellent personalized care for patients with vasculitis, to be a platform for cutting-edge research, to educate trainees and peers, and to advocate for our patients. Not only are we ensuring these patients receive excellent clinical care, but we're able to educate them on their diseases and inform them of research opportunities.
Q: How does this program stand out compared to similar programs?
There are not many programs in the country for vasculitis, especially in Boston or the nearby area. There are other groups that treat some forms of vasculitis, but we provide care to all patients across the spectrum of vasculitis, which is more than 20 different diseases.
One of our strengths is this is a very multidisciplinary program, as vasculitis can potentially affect any organ. We've built up a network of collaborators across other specialties at Mass General, including nephrology, dermatology, neurology, radiology, pathology and more. This community of providers is foundational to the program because we can streamline the referral process if we need an assessment or biopsy in another department.
Q: Can you describe the nature of your research?
Between the two of us and other members of our team, our work covers a good balance of observational studies and clinical trials. For our observational work, we utilize large datasets of patients within the Mass General Brigham system to understand the factors driving clinical outcomes for patients living with vasculitis. We have a longitudinal cohort of patients with ANCA-associated vasculitis, getting regular blood samples for biomarker discovery and leveraging surveys to identify care gaps and opportunities to improve outcomes. We're particularly interested in patient quality of life and how other medical problems affect their care.
Our currently enrolling clinical trials are focused on patients with giant cell arteritis, which is the most common type of vasculitis. In the next six months, we are looking forward to launching new trials for patients with ANCA-associated vasculitis and other conditions. The goal is to find treatments that are more effective and safer. For example, these diseases are inflammatory and most require prednisone, which is associated with many toxicities. Given its side effects, we are dedicated to identifying alternatives, so one important aspect of our work is studying how to safely reduce the need for prednisone.
Q: How does this work impact the level of care given to patients in the program?
The goal of our research is to influence clinical care as well as the guidelines and recommendations about how we should be managing these patients. Taking a step back, our approach to clinical care and the research we pursue is ultimately aimed at helping improve a broad spectrum of outcomes for patients living with vasculitis by taking a more holistic approach. We want to be sure we treat their vasculitis and get it well-controlled, but we're constantly thinking about how their other medical problems—diabetes, high blood pressure, or kidney disease—also influence their quality of life and outcomes. We want to be certain our patients get all the care they need to improve long-term outcomes.
Some of the clinical research we did has led to regulatory approvals of different medications that improve patient care. A recent international, multi-center study Dr. Unizony led with John H. Stone, MD, MPH, director of clinical trials in rheumatology at Mass General and a member of the Rheumatology Vasculitis Program, investigated the drug tocilizumab. The results of this study (published in the New England Journal of Medicine) led to the drug's approval, making it the only FDA-approved drug for giant cell arteritis.
Q: Can you discuss your Vasculitis Patient Conference?
We partnered with the Vasculitis Foundation as part of an initiative called Vasculitis USA, so these conferences are happening across the country. The idea is to bring groups of patients with vasculitis together in-person to learn more about the disease, meet other patients, and have informal discussions with providers. This meeting was driven by one of our goals for the program, which is to engage in more patient education. We often hear from our patients that they want to learn more about their condition and find ways to better manage their disease. This conference was an opportunity to bring folks together to have some of these conversations.
Q: What were some presentations at the conference that stood out to you?
There was an important talk from the Department of Psychiatry about health-related quality of life and the uncertainty and stress that can be associated with vasculitis, including overall well-being, mindfulness, and things patients can do day-to-day to feel better. Other presentations covered giant cell arteritis and ANCA-associated vasculitis, chronic kidney disease, and the toxicities associated with steroids and ways to minimize that. The Vasculitis Foundation gave a couple of presentations, as well. Some patients spoke about their experiences, which provides some opportunity for patient advocacy.
We also introduced new approaches to care at the conference and updated patients on exciting developments in the field. There's been tremendous change even in the last few years, so this was a great opportunity to highlight that progress and set a benchmark. When we meet again in a year, we'll be able to reflect on all the new progress that's been made.
Learn more about the Vasculitis Program
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