In 2014 the Vasculitis Foundation created the Vasculitis Clinical Research Consortium (VCRC) -Vasculitis Foundation (VF) Fellowship Program in Clinical Investigation. The VCRC is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis. The VF has partnered with the VCRC since its creation in 2002 to recruit patients with vasculitis to participate in research and to connect researchers with patients.
Summary: The VCRC-VF Fellowship is a mentored training program of up to two years for physician-investigators who have a strong interest in vasculitis and wish to pursue a period of specialized training with an emphasis on clinical and/or translational patient-oriented clinical investigation. The trainee will undertake the Fellowship between 2014-2019 at a VCRC-affiliated site in North America that has an established distinct clinical and research program in vasculitis and availability of senior faculty mentors.,
For more information: Joyce A. Kullman, Executive Director
Introducing our 2019-2020 VCVR-VF Fellow
Sebastian E. Sattui, MD
Hospital for Special Surgery, New York City, New York
It was during a medical clerkship that Sebastian Sattui, MD, first recognized the complexity of vasculitis, and the profound impact the disease has on patients’ lives.
He had encountered a patient with EGPA (eosinophilic granulomatosis with polyangiitis) for the first time. “I will always remember the patient’s long list of symptoms, the medical mystery he had represented so far, and the certainty with which the attending rheumatologist made the diagnosis, just after listening to the patient and checking his chart,” recalled Dr. Sattui, a rheumatology fellow at the Hospital for Special Surgery in New York City.
That and other early experiences sparked an interest in vasculitis that has fueled Dr. Sattui’s medical career and the research he will conduct as the recipient of the 2019 VCRC-VF Fellowship Award.
The Vasculitis Clinical Research Consortium (VCRC)-Vasculitis Foundation (VF) Fellowship is a mentored training program of up to two years for physician-investigators who have a strong interest in vasculitis and wish to pursue specialized training in patient-oriented clinical investigation.
The VF contributes $50,000 in matching funds to the fellowship, made possible through donors and proceeds from the annual Chicagoland Vasculitis Golf Tournament. Organized by now-retired VF board member Jeffrey Fishbein, PsyD, and his extended family, the event has raised more than $500,000 since 2014, with proceeds going to the VCRC-VF Fellowship Program (and to the opening of the Vasculitis Clinical Research Program at Northwestern University, Illinois, three years ago).
“The VCRC-VF is an important fellowship program that has enabled young and talented physicians to train in the area of vasculitis,” said Dr. Fishbein. “The tournament has been a proud supporter of this program since we began this event five years ago.”
During the two-year fellowship, which begins in July 2019, Dr. Sattui will continue work on two research projects. The first project is analyzing the prevalence and impact of frailty in patients with polymyalgia rheumatica (PMR) and giant cell arteritis (GCA), which often strike people over the age of 50.
“Frailty is a process that can affect our ability to bounce back after an illness or other stressful events, such as a fall or an infection, as well as our ability to live independently,” said Dr. Sattui. “I think frailty is an unexplored outcome that needs to be further studied in PMR and GCA patients, since it can impact both quality of life and clinical outcomes.”
Dr. Sattui’s second project involves assessing a new biomarker, mitochondrial DNA, as a measure of disease activity in patients with ANCA vasculitis. (Mitochondrial DNA is a genetic material that when detected in the blood, can be used as a marker of inflammation.)
“We already have a small pilot study where we have shown some differences in the levels of this biomarker in patients with active disease and remission.” During the fellowship, Dr. Sattui will explore the potential clinical use of this biomarker, with the goal of potentially identifying changes in disease activity prior to symptoms and allowing prompt treatment.
Dr. Sattui expressed gratitude for the Fellowship, to his mentor Robert Spiera, MD, his sponsoring institution—the Hospital for Special Surgery (HSS)—and the HSS Vasculitis, Scleroderma and Myositis Center, where the fellowship will take place.
“The Vasculitis Foundation is a unique and exemplary organization that not only empowers patients, but also gives them the opportunity to influence and change the landscape of medical care,” said Dr. Sattui. “The VCRC-VF fellowship is a great example of that, where the foundation is supporting a physician who shares the objectives of the VF.”
Dr. Spiera is excited about the prospect of Dr. Sattui focusing on vasculitis over the next two years as a VCRC-VF fellow. “In addition to further developing clinical expertise in the care of these disorders, he has already initiated a number of studies hoping to better define frailty in patients with vasculitis and polymyalgia rheumatica,” said Dr. Spiera. “Frailty is an area that is increasingly recognized as important to patients’ well-being, but to date, not adequately studied in these diseases.”
Introducing our 2019-2020 VCVR-VF Fellow
Stephanie Garner, MD
McMaster University in Hamilton, Ontario, Canada
Stephanie Garner, MD, MSc, FRCPC, developed an interest in vasculitis as an internal medicine resident at the University of Calgary in Alberta, Canada, while admitting a patient to its nephrology service. The patient had pulmonary renal syndrome—respiratory failure that involves bleeding in the lungs and kidney failure—due to ANCA-associated vasculitis.
“It was a life-changing event for this previously healthy patient,” Dr. Garner explained. “And this was an area of medicine where I wanted to make a difference.” (ANCA vasculitis, or anti-neutrophil cytoplasmic antibody vasculitis, is a group of diseases that affect the small blood vessels of the body.)
Dr. Garner is one of two physicians who received the 2020 Vasculitis Clinical Research Consortium (VCRC)-Vasculitis Foundation (VF) Fellowship Award. The VCRC-VF Fellowship is a mentored training program of up to two years for physician investigators who have a strong interest in vasculitis and wish to pursue specialized training in patient-oriented clinical investigation. (The other fellow, Alvise Berti, MD, of the University of Trento, Italy, will do his fellowship at the Mayo Clinic, Rochester, Minnesota. He will be featured in a future issue of the VF Newsletter.)
Dr. Garner’s 2020 fellowship is taking place at McMaster University in Hamilton, Ontario, Canada, where she completed a rheumatology fellowship in December 2018, participating in cutting-edge collaborative care for patients with vasculitis. “I realized what a complex and multisystem disease vasculitis is, and that it takes a team to care for these patients. I wanted to be part of that team,” she added. Dr. Garner joined McMaster University’s Division of Rheumatology as a clinical scholar in January 2019.
“Training young physicians in clinical care and conducting research in the vasculitis field is critical for the future of our patients,” said Joyce Kullman, VF Executive Director. “The VF is committed to helping fund fellowships.”
The VF has provided over $300,000 in matching funds to support fellowships, made possible through the generosity of donors and fundraising events. “We are grateful to the Haberman Family Foundation for their generous support of Dr. Garner’s fellowship,” Kullman added.
“My primary goal of the fellowship is to gain experience and exposure to as many patients with vasculitis as I [can] so that I develop a breadth and depth of knowledge in this area,” said Dr. Garner. This includes gaining expertise in the diagnosis and management of vasculitis patients and their disease. “My second goal is to collaborate with the vasculitis community and gather the skills to be an active and productive member of this community.”
Dr. Garner’s mentor is Nader A. Khalidi, MD, FRCPC, Professor of Medicine, McMaster University, and head of service, Rheumatology, St. Joseph’s Health Care System. “Dr. Garner has already brought her skills in rheumatology to vasculitis, and clinically has made a great impact on patient care, and has facilitated careful and urgent care for those in need,” he said.
During the one-year fellowship, which officially began in July 2019, Dr. Garner has been working on two research projects. “The first is looking at using large administrative databases to develop cohorts of vasculitis patients here in Canada,” she noted.
“The second is a project describing a collaborative subspecialist clinic as a model of care for vasculitis patients.” After completing her vasculitis fellowship, Dr. Garner plans to continue through McMaster University’s clinical educator track, pursuing a career as an academic rheumatologist.
Introducing our 2017-2018 VCVR-VF Fellow
Kevin Byram, MD
Cleveland Clinic Center for Vasculitis Care and Research
Keith Byram, MD, graduated from the University of Alabama School of Medicine and completed his internal medicine and rheumatology training at Vanderbilt University Medical Center. Beginning in July 2017, he started a one-year vasculitis fellowship at the Cleveland Clinic Center for Vasculitis Care and Research. Dr. Byram’s fellowship has been supported by the Vasculitis Clinical Research Consortium (VCRC), the Vasculitis Foundation (VF) and Vanderbilt University Medical Center.
“Caring for patients with vasculitis has been a true pleasure,” said Dr. Byram. “The opportunity to guide someone and their family through a chronic disease with such devastating potential has been a humbling honor. With the advent of novel and repurposed therapies and treatment strategies, our ability to limit the serious nature of vasculitis has improved, but much still needs to be done.”
During his time as a vasculitis fellow, in addition to gaining advanced skills in the care of people with vasculitis, Dr. Byram will be continuing research that he began at Vanderbilt under the mentorship of Dr. Michelle Ormseth. His research project has focused on examining unique expression profiles of microRNA (mRNA) in patients with ANCA-associated vasculitis (AAV). mRNA is a molecule that silences certain genes.
“Identification of unique mRNA expression patterns in AAV could make diagnosis easier or help in monitoring of disease activity,” said Dr. Byram. “This study could provide further information about how and why AAV occurs and relapses, which in turn could lead to more targets for treatment.”
MicroRNA is already being tested in diseases such as cancer. Small studies have identified several candidates that seem to be expressed at higher levels in patients with AAV.
“I am grateful for the financial support both the VF and VCRC have made available to me to pursue another year of training in the field of vasculitis,” said Dr. Byram. “The foundational, professional, and mentoring relationships I create will serve me well as I work toward my goals.”
At the end of his fellowship, Dr. Byram will be returning to Vanderbilt to establish a vasculitis clinic.
Editor’s Update: Dr. Byram is now the Co-director of the Vanderbilt Vasculitis Clinic in Nashville, Tennessee.
Introducing our 2017-2018 VCRC-VF Fellow
Kaitlin Quinn, MD
MedStar Georgetown University Hospital, Washington, D.C
Kaitlin Quinn, MD, is the recipient of the 2017 VCRC-VF Fellowship. She received her medical degree from New York Medical College in Valhalla, New York. She completed her internal medicine residency and a two-year rheumatology fellowship training program at MedStar Georgetown University Hospital in Washington, D.C. Dr. Quinn is currently serving as a junior faculty member in the Division of Rheumatology, Immunology and Allergy at Georgetown.
“Vasculitis initially sparked my interest in rheumatology,” she said. “I rotated through the rheumatology consult service as a medical intern. The most fascinating part of the rotation for me was the complexity of these patients.”
She sees many research and clinical opportunities in this area. The fellowship will help deepen her understanding of the disease and give mentorship opportunities needed to broaden her clinical skills and enable her to conduct investigational research.
PET Scans in Diagnosis and Treatment
One of Dr. Quinn’s goals is to look at how positive-emission tomography (PET) scans can impact the diagnosis and treatment of vasculitis. PET scans use a small amount of radioactive material attached to glucose to find areas of the body that are biologically active, such as inflamed vessels in the case of vasculitis.
Currently, it can be difficult to determine if a patient’s vasculitis is active. Normal laboratory values can be seen even when the disease isn’t in remission. The aim of this research is to give clinicians another diagnostic tool to help guide treatment decisions in patients with vasculitis.
“A key part of the fellowship is to allow further development of my clinical skills and management of vasculitis patients,” said Dr. Quinn. “The fellowship allows for professional growth and accruement of skills with the hope that I will eventually assume leadership of the vasculitis clinic at Georgetown and one day expand it to a formal vasculitis center that can participate in clinical trials.”
Dr. Peter C. Grayson is head of the Vasculitis Translational Research Program (VTRP) at The National Institute of Arthritis and Musculoskeletal and Skin Diseases, a part of the National Institutes of Health in Bethesda, Maryland. He is serving as Dr. Quinn’s mentor during the Fellowship.
“There is a lot about Dr. Quinn’s fellowship that is unique,” said Dr. Grayson. “The NIH program frequently performs research studies on patients with vasculitis who otherwise receive clinical care in the vasculitis clinic at Georgetown run by Dr. Thomas Cupps. Dr. Quinn’s fellowship will further strengthen the collaboration between our institutes and will help her to expand vasculitis-focused research initiatives at Georgetown.”
Dr. Cupps is preparing to transfer patients to Dr. Quinn’s vasculitis clinic. The fellowship is a way to prepare Dr. Quinn to not only continue the clinic, but to build on Dr. Cupps’ work and elevate it to the next level as a vasculitis center.
“She will spend some of her time working at the VTRP, seeing patients and participating in research,” said Dr. Grayson. “This will give her more time to be a student of vasculitis on both the clinical and the research level.”
Dr. Quinn’s research projects should help enhance vasculitis treatment and research. Currently, imaging assessment of patients with large vessel vasculitis is difficult because there are no standardized guidelines.
“A major goal of Dr. Quinn’s project is to generate data that will inform the development of imaging studies guidelines in large vessel vasculitis,” said Dr. Grayson. “By studying the strengths and limitations of specific imaging modalities, including PET scans and angiography, we hope to provide guidance to physicians on how to use these tests effectively for clinical care purposes. We also want to test if imaging studies are useful as outcome measures in clinical trials.
The support of the VF gives us an opportunity to test how medications used to treat vasculitis affect both how a patient feels and how their blood vessels look on imaging studies.”
Editor’s Update: Dr. Quinn is now a Staff Clinician, Vasculitis Translational Research Program, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health.
Introducing our 2016-2017 VCRC-VF Fellow
Jennifer Rodrigues, MD
McMaster University, Hamilton, Ontario Canada
The Vasculitis Foundation welcomes Dr. Jennifer Rodrigues, as our 2016-2017 VCRC-VF Fellow. Dr. Rodrigues completed medical school at the University of Calgary in 2011, her internal medicine training at McGill University in 2014, and a nephrology fellowship at the University of Toronto this past year. She will complete this fellowship under the direction of Dr. Michael Walsh, Associate Professor of Medicine and Clinical Epidemiology & Biostatistics at McMaster University, Hamilton, Ontario
Dr. Walsh said that he is particularly excited to be mentoring Dr. Rodrigues because she is bringing a stellar background in basic immunology and a longitudinal clinical experience to her new role.
“Dr. Rodrigues is highly regarded for her clinical skills, thoughtfulness with respect to her patient’s well-being and attention to detail. These qualities are complemented by her scientific curiosity and highly organized nature,” said Dr. Walsh. “Although I only recently started working with Dr. Rodrigues, her drive to develop the best evidence to guide the treatment of patients with vasculitis is obvious. With the help of the VCRC-Vasculitis Foundation award, Dr. Rodrigues is on the road to becoming a leader in vasculitis research and her contributions will undoubtedly improve the quality of care provided to patients.”
In the following interview with the Vasculitis Foundation, Dr. Rodrigues talked about why her particular focus on nephrology is such a critical area of research. She also shared why the VCRC-VF Fellowship is not only a professional opportunity for her, but believes it could yield valuable research insights that will help vasculitis patients in the future.
Briefly describe the focus of your work.
I am a nephrologist interested in glomerulonephritis, diseases that affect the filters of the kidneys, the second most common cause of kidney failure requiring dialysis. The kidneys are frequently affected by vasculitis and while there are treatments, including immunosuppressive and anti-inflammatory steroid medications, to initially control the disease and prevent flare-ups, we don’t know how long patients should remain on these medications.
The duration of treatment has to be balanced with the risk of infection, bone fracture, and the impact on a patient’s quality of life. I will study whether long-term treatment with very low doses of medications prevents flare ups of vasculitis without significant side-effects. Opinions about whether low-dose medications, particularly prednisone, work in vasculitis vary dramatically around the world so the information from this study will change how vasculitis is treated no matter what it shows!
Why is this important to people with vasculitis?
Most patients with vasculitis will receive prednisone through the course of their treatment. At high doses, prednisone can control the damage vasculitis causes but, it also increases the risk of infections, bone fractures, and may play a role in cardiovascular disease and has very obvious effects on patient’s quality of life. While most of these side-effects disappear at low doses for most patients, it is not clear whether they continue to reduce the risk of vasculitis flare-ups. Avoiding long-term use may reduce the risk of harmful side effects but it may also increase the risk of disease flare-ups and the damage to organs like the kidney.
How did you decide on your specialty?
My interest in nephrology began as a teaching assistant in physiology and was solidified during the early clinical rotations of internal medicine training where one of my first patients had kidney failure requiring dialysis. It is a diverse specialty combining various areas including electrolytes, dialysis, kidney transplant, glomerulonephritis, and immunology in daily practice. We look after a wide variety of patients, from the sickest patients in the intensive care unit to those in clinic who are living with kidney disease. Every day we are presented with new challenges and the opportunity for an important impact on patients’ lives.
What do you find most challenging about it?
I think the biggest challenge in nephrology is the need for more studies to better understand the complex diseases that affect the kidneys such as vasculitis, in order to determine the best treatments for our patients.
As a nephrologist, you are focused specifically on studying the impact of vasculitis on the kidneys. Tell us more about the research you will be doing into this area.
With the support of the Vasculitis Foundation, I intend to conduct a pilot clinical trial examining whether long-term low dose prednisone is effective at preventing relapse of ANCA-associated vasculitis and its impact on kidney function with a particular focus on the side effects of prednisone and its impact on patients’ quality of life.
I will study whether long-term treatment with very low doses of medications prevents flare ups of vasculitis without significant side-effects. Opinions about whether low-dose medications, particularly prednisone, work in vasculitis vary dramatically around the world so the information from this study will change how vasculitis is treated no matter what it shows!
Talk about how your research could potentially impact the way that patients are treated with prednisone in terms of risks vs. benefits to the patient.
Avoiding long-term use of prednisone may reduce the risk of harmful side effects but it may also increase the risk of disease flare-ups and the damage to organs like the kidney. My study will clarify the risks and benefits of low-dose prednisone which will ultimately change the way many patients around the world are treated. Importantly, this study will also help us understand the potential effects of low-dose prednisone in other inflammatory and kidney diseases.
You have said that glomerulonephritis (GN) is the next big development in our area of study. Please explain glomerulonephritis and why it needs greater research.
Glomerulonephritis (GN) is a complex and rare disease that is the second most common cause of kidney failure. Specialized clinics, as well as an increase in the amount of clinical research in this area will translate into improved outcomes. There are many types of GN in addition to vasculitis, and these patients frequently receive long-term immunosuppressive medications to control their disease.
Determining how long these patients should remain on immunosuppression once their disease is in remission in order to balance medication side effects and impact on patient’s quality of life with the risk of disease relapse is an important research question.
Personally, what does this VF Fellowship mean to you? How do the VF Fellowships advance our understanding of vasculitis?
This fellowship will provide me with the opportunity to improve the care provided to patients with vasculitis. I am fortunate to have many excellent mentors within the field of vasculitis and glomerulonephritis and to be among the many previous successful recipients of this fellowship.
The Vasculitis Foundation has been critical to representing patient interests, raising awareness about these diseases, and helping to set research goals.
What is the most rewarding about your work?
It is a privilege to look after patients with kidney disease as we are often able to treat them when they are very ill in the hospital and then follow them over time in the clinic after they improve. We also look after a wide variety of patients of all ages and with a variety of conditions. We see patients with very aggressive types of vasculitis that can cause kidney failure and to be able to offer effective therapy is very rewarding.
Introducing our 2015-2016 VCRC-VF Fellow
Medha Soowamber, MD
Medicine/Rheumatology, Mount Sinai Hospital, Toronto, Canada
“On the first day of her longitudinal clinic, I observed Medha during a full encounter with a new patient, and I was impressed with both her clinical and communication skills. She is kind and puts her patients very much at ease. Medha is an excellent listener and does not interrupt, and still directs the interview. She is very responsible and follows up on her lab work and imaging studies. Medha is curious, searches the literature without being asked and asks good questions. A number of patients have spontaneously commented to me on how impressed they were with her kindness and thoroughness. Medha is a bright young woman who is very motivated in orienting her career in the field of vasculitis.” ~Simon Carette, MD, Director of the Vasculitis Clinic and Deputy Physician-in-Chief, Mount Sinai Hospital, Toronto
“My first peek into the field of rheumatology was when, as a fourth-year medical student, I did a rheumatology rotation. What initially struck me was the wide variety of diseases that this field entails,” recalled Medha Soowamber, the recipient of the 2015 Vasculitis Research Clinical Consortium – Vasculitis Foundation (VCRC-VF) clinical fellowship.
“My interest was further driven by its diagnostic and therapeutic challenges as well as its multi system approach. Someone told me that rheumatologists are the ‘Sherlock Holmes of medicine.’ This statement is indeed true!”
Dr. Soowamber completed medical school and internal medicine training at McGill University in Montréal, and two years of rheumatology training at the University of Toronto.
“During my rheumatology training, I was given the opportunity to do several oral presentations to physicians, medical students, and even patients,” she said. “I received positive feedback from these talks, especially the ones given to patients. They were impressed by the simplicity and clarity of my presentations.”
The Mauritius-born Soowamber will complete her VCRC-VF fellowship at Toronto’s Mount Sinai Hospital, under the guidance of mentor physicians Simon Carette and Christian Pagnoux.
“This one-year clinical fellowship will allow me develop the knowledge, expertise and experience required in diagnosing as well as managing patients with vasculitis,” Soowamber explained. In fact, she finds that one of the most rewarding aspects is the long-term doctor-patient relationship that invariably develops. “What keeps me motivated is the awareness that I can potentially make a positive impact on someone’s life.”
The fellowship also will give Soowamber the opportunity to better understand the current research in vasculitis. “As I deepen my knowledge and gain experience in vasculitis, I would like to incorporate the teaching of this rare disease to both professionals and patients as part of my future career,” she said.
Soowamber is excited by the opportunity the fellowship provides.
“There are still many unanswered questions in vasculitis; it is a growing field with extensive clinical research being undertaken to improve the care and quality of life of patients,” she noted. “With the knowledge gained from the fellowship, I’ll be able to devote my career to greater research in vasculitis and the development of educational and awareness programs for patients and health care providers.”