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Research Information

Research Information

Research and clinical trials are essential for the advance of medicine. The effectiveness of each new breakthrough can only be assessed by putting them into practice with individuals affected by the disease.

For those who care about vasculitis and discovering new ways to identify, diagnose, and treat these diseases, there are many ways to support the advancement of research. Volunteer participation in clinical trials is one way to help progress knowledge about the various types of vasculitis. As a volunteer, your participation can help potentially new, successful treatments become available to others who understand living with vasculitis as you do. For certain non-medication based studies, a volunteer may be any individual who is willing to participate. Volunteers can be spouses, friends and family members who wish to make a difference in vasculitis research.

Open Research Studies

Clinical Epidemiology and serological/plasma and genetic factors in systemic vasculitis

Purpose of Study:

This research is being done to gather information about patients with certain vasculitis diagnoses. The Johns Hopkins Vasculitis Center is building a comprehensive database of information concerning vasculitis patients as part of its mission to facilitate research.

Recruiting patients:

  • Diagnosed with vasculitis
  • Patients of the Johns Hopkins Vasculitis Center

Coordinator/Contact: Hannah Smith
Email: hsmith97@jh.edu
Phone number: 410-550-0122
Principal Investigator: Duvuru Geetha, M.D.
IRB#: IRB00355688

A Randomized, Double-blind, Placebo-controlled Phase 4 Clinical Trial to Evaluate the Long-term Safety and Efficacy of Avacopan in Subjects With Antineutrophil Cytoplasmic Antibody (ANCA)-associated Vasculitis

Purpose of the Study:

This study is to make sure the medicine called avacopan is safe to use for a long time. It will check for liver problems and serious allergic reactions. It will also track the medicine keeps the illness in remission, kidney function, and how the treatment affects daily life.

Recruiting patients:

  • Newly diagnosed or relapse of GPA or MPA
  • Age 18 years or older
  • Positive test for anti-PR3 or anti-MPO (current or historic) antibodies
  • Patients of the Johns Hopkins Vasculitis Center

Coordinator/Contact: Hannah Smith
Email: hsmith97@jh.edu
Phone number: 410-550-0122
Principal Investigator: Duvuru Geetha, M.D.
IRB#: IRB00403470

Frequently Asked Questions about Clinical Trials

From the definition of a clinical trial to information and questions that are good to ask your doctor before participating in a trial, this section address many of the common questions that arise when deciding to join in supporting vasculitis research.

What is a clinical trial?

A clinical trial is a type of research study. Clinical trials test a new treatment and compare it to the available treatment (the usual way doctors treat a certain health condition or disease). For example, a clinical trial might study how well a new medicine helps people with cancer or if certain foods help people stay healthy. The Food and Drug Administration requires clinical trials before a new medication can be approved. Sometimes it is necessary to compare an experimental treatment with a placebo (inactive treatment) when no standard treatment exists.

FDA Consumer magazine published this article “Inside Clinical Trials Testing Medical Products in People” which may assist in understand the purpose, process and procedure of clinical trials from the Food and Drug Administrative’s perspective. 

Why should I take part in a clinical trial?

Because the trials are investigations designed to learn more about a specific disease or treatment, personal benefit cannot be guaranteed. The benefits of taking part in a clinical trial depend on the study you join. The benefits also depend on your assigned study group. Here are some possible benefits you might get from taking part in a clinical trial. You may:

  • get free health exams;
  • learn more about your health;
  • take a more active role in your own health care;
  • have your health watched closely;
  • receive some medications at no cost to you; and help answer research questions that may mean better health for people in the future.

What are the risks of taking part in a clinical trial?

There are risks to you when you take part in a clinical trial. The study doctors and coordinators will watch you carefully for any changes in your health. You are always free to leave the study. The risks will vary depending on the kind of trial you join. Here are some possible risks.

  • You may have side effects (health problems) from taking a new medicine or getting a new procedure that is being tested. There may be side effects that are unexpected. Usually you will need to give blood samples. Some people find that process uncomfortable.
  • The visits for the clinical trial may be frequent and time consuming.

The therapy you receive may not be effective or you may be assigned to a placebo group

How do I know if I have been given all the information I need about taking part in a clinical trial?

When beginning any study the doctor, or investigator, must ask approval from an Institutional Review Board (IRB). The IRB is a committee of doctors and other medical personnel that have no ties to the study. The IRB makes sure the study is as safe as possible and that the “informed consent” explains all of the important information to the patient.

Before people join a clinical trial, they go through something called the “informed consent process”. This process means that you are given written information that tells you about the purpose of the study; risks and benefits of being in the study; and what will happen to you in the study. You will be given an informed consent form, which you will need to read over very carefully. Take the form home and share it with family members, friends, and your primary care doctor. Once you have read the form, ask questions about words or procedures that you don’t understand.

Another part of the informed consent process is that you can ask questions about the study at any time. It is your right to have all the information you need to make your decision about whether or not to take part in a clinical trial. Don’t let anyone pressure you into taking part in a clinical trial. The choice is yours.

What if I decide that I don’t want to be a part of the study, even though the study has already started?

That’s okay. You can change your mind and leave the study at any time. Remember that being a part of a clinical trial is always your choice. Your relationship with your doctor will not change because you decide to leave the study. Your care will not be affected in any way.

Who takes part in clinical trials?

Many different people take part in clinical trials. People who take part in clinical trials are volunteers who meet eligibility criteria for the study. Eligibility criteria are requirements that someone must meet to be a part of the study. Some examples of eligibility criteria are having a certain disease such as Wegener’s Granulomatosis (WG); not showing improvement on standard WG medications; being a certain age; or being in good health. These criteria help make sure that the study answers the right research question.

Is it safe to participate in a clinical trial if trying to conceive a child or pregnant?

Check with your doctor or the study coordinator to find out if it is safe to participate in a particular study if you are trying to conceive, if you are pregnant or postpartum. If the trial is assessing medications, there is often concern about how medicines used in a study could affect a pregnancy regardless of being male or female. The informed consent form should tell you if any of the medicines in the study could affect a pregnancy.

For women, if you are postpartum and breast feeding, check with your doctor to make sure it is okay to breast feed your baby while you are taking part in a clinical trial. Don’t be afraid to ask questions about safety.

How can I find out about clinical trials or other research studies at the Johns Hopkins Vasculitis Center ?

If you would like more information about one of our research activities or if you would like to be a participant, please contact the Johns Hopkins Vasculitis Center.

How to Support the Johns Hopkins Vasculitis Center

Advancing vasculitis research to improve diagnosis and treatment is critical for the care of our patients and important to the overall mission of our Center. We are successful in our mission only because of the combined efforts of all members of our Johns Hopkins Vasculitis Center team and their valuable contributions:

  1. Dedicated physicians and research investigators
  2. Generous patients who selflessly contribute their time and samples
  3. Financial contributions to support vasculitis research

We welcome you to consider becoming a participant in one of our research studies related to vasculitis. Many studies involve little more than donating a blood sample during one of your appointments.

Often grateful patients, family members, and friends ask what they can do to support the work of the Johns Hopkins Vasculitis Center.  Financial support for medical research directly benefits our patients. For this reason, we have established the Discovery Fund for Vasculitis Research.

Although grants support some of our research and patient education projects, monetary gifts from individuals who realize the importance of these efforts play an essential role in maintaining the Johns Hopkins Vasculitis Center as a Center of Excellence.

We would like to share with you one such inspiring story:

Linda’s Loop – Linda Gray’s Family “hits the trail” in her honor 

We are happy to discuss research in progress with all current and potential donors. Please contact us at the Center directly to learn more about making a tax deductible contribution:

The Johns Hopkins Vasculitis Center

Bayview Medical Center
5501 Hopkins Bayview Circle
JHAAC, Room 1B.1A
Baltimore, Maryland  21224

Phone: 410-550-6825

Anna Dugan
Director of Development
Office: 443-571-7207
Email: adugan3@jh.edu

All information contained within the Johns Hopkins Vasculitis Center website is intended for educational purposes only. Visitors are encouraged to consult other sources and confirm the information contained within this site. Consumers should never disregard medical advice or delay in seeking it because of something they may have read on this website.

About Our Center

About Our Center

Our center is composed of dedicated physicians, research coordinators and patient care coordinators who serve patients with vasculitis. Many patients who receive these diagnoses have never previously heard the term “vasculitis” or met other patients with the same condition. The vasculitis syndromes (known together as “the vasculitides”) are a group of diseases that can affect every organ system, and occur in people of all ages, genders and backgrounds. Because these diseases are relatively rare and can present in many different ways, the diagnosis of vasculitis is often difficult to reach, and many patients suffer a period of uncertainty prior to finally arriving at a diagnosis of vasculitis. In our mission of serving all patients with vasculitis, we consider the provision of clear and accurate information to be one of our most important responsibilities.

At this Website you will find:

  1. explanations of vasculitis in lay terms
  2. specific discussions of individual diseases
  3. a review of the common therapies for vasculitis
  4. answers to commonly asked questions
  5. information on how to make an appointment to be seen in the Johns Hopkins Vasculitis Center
  6. information about ongoing research at the Johns Hopkins Vasculitis Center
  7. ways in which you can contribute to advancing research and progress in vasculitis.

Please note that this Website is sponsored through the generosity of various friends of the Johns Hopkins Vasculitis Center. We update the Vasculitis Center Website regularly and strive to provide solid, usable information on various types of vasculitis, treatments, and support resources.

Thank you for visiting our Website. We hope you will find it accessible and useful as you learn about these challenging diseases.

Yours truly,

Brendan Antiochos, MD
Assistant Professor of Medicine
Johns Hopkins University School of Medicine,
Division of Rheumatology
Director, The Johns Hopkins Vasculitis Center

Meet Our Team

Vasculitis Center Doctors

Duvuru Geetha, MD

Professor of Clinical Medicine

Dr. Geetha is a Professor of Medicine in the Division of Nephrology. A graduate of Madras Medical College, India, she completed Internal Medicine training in U.K. She did her Internal Medicine Residency at York, PA and Nephrology fellowship at Johns Hopkins Bayview Medical Center. She has been on Hopkins faculty since 1998. She is a member of Royal College of Physicians (U.K.), American Society of Nephrology, American Society of Transplantation and a consultant for the vasculitis foundation. She is a member of the Miller Coulson Academy of Clinical Excellence at Hopkins. Her clinical interests include renal disease in vasculitis patients with a focus on ANCA associated vasculitis and Henoch-Schonlein Purpura. She does clinical and translational research in vasculitis with a focus on ANCA associated vasculitis and renal disease.

Brendan Antiochos, MD

Assistant Professor of Medicine

Dr. Antiochos is a graduate of Dartmouth College and Dartmouth Medical School. He completed internal medicine residency at Oregon Health & Science University, then rheumatology fellowship at Johns Hopkins, before joining the faculty here in 2014. Dr. Antiochos assumed the role of Director for the vasculitis center in 2022. In addition to seeing patients in the vasculitis center, Dr. Antiochos performs laboratory-based research on autoimmune diseases. His laboratory work focuses on activation of the innate immune system and the discovery of novel autoantibodies.

Philip Seo, MD

Associate Professor of Medicine

A graduate of Harvard College and the College of Physicians and Surgeons at Columbia University, Dr. Seo completed his Internal Medicine training as a member of the Osler Medical Service at the Johns Hopkins Hospital. Since then, he has worked at Johns Hopkins in several capacities, including as a hospitalist at Johns Hopkins Bayview Medical Center, and as an Assistant Chief of Service of the Department of Medicine at the Johns Hopkins Hospital, before joining the Division of Rheumatology. His research interests are the assessment and treatment of ANCA-associated vasculitides, including Churg Strauss Syndrome, Wegener’s Granulomatosis, and Microscopic Polyangiitis.

David B. Hellmann, MD

Aliki Perroti Professor of Medicine

Dr. Hellmann is the Chairman of the Department of Medicine and Vice Dean at The Johns Hopkins Bayview Medical Center, and the Aliki Perroti Professor of Medicine. A graduate of Yale University and Johns Hopkins Medical School, Dr. Hellmann received his Internal Medicine training on the Osler Service at Hopkins, and trained in Rheumatology at the University of California, San Francisco. He has been on the Johns Hopkins faculty since 1986.

Desh Nepal, MD

Assistant Professor of Medicine

Michael Cammarata, MD

Assistant Professor of Medicine

Dr. Cammarata is a graduate of The College of William & Mary. He attended Eastern Virginia Medical School and completed his residency in Internal Medicine at the University of California San Francisco. He returned to the east coast for rheumatology fellowship at Johns Hopkins, joining faculty in 2024. He is RhMSUS certified in musculoskeletal ultrasound, and also practices general medicine as a hospitalist at Johns Hopkins Hospital. 

Collaborators

Vasculitis can involve virtually any organ system within the body. Hence, our Vasculitis Center maintains close collaborative relationships with experts from other specialties. The Vasculitis Center includes collaborators from several medical disciplines who help provide the highest level of care for our patients. They have extensive experience managing vasculitis within their subspecialty and work closely with the Physicians in the Vasculitis Center to provide comprehensive care for our patients:

Otolaryngology (ENT):

Our ENT team includes specialists in inflammatory sinus disease, sensorineural hearing loss, and chronic middle ear disease. We are pleased to also have a Doctor of Audiology, Dr. Dinkes, who specializes in inflammatory process on our team as well.

  • Dr. Jean Kim (sinus disease, middle ear manifestations)
  • Dr. Alexander Hiller (upper airway disease)
  • Dr. Roni Dinkes (audiology)

Neuro-ophthalmology:

  • Dr. Andrew Carey

Endocrinology / Osteoporosis:

  • Dr. Han Na Kim

Welcome to the Johns Hopkins Vasculitis Center

Welcome to the Johns Hopkins Vasculitis Center

Dear Vasculitis Center Website Visitor:

SEO

Welcome to the Johns Hopkins Vasculitis Center Website. This Website, maintained by the Physicians, Research Coordinators, and Patient Care Coordinators at our Center, is designed to provide information for patients with vasculitis in language that non-medical people can understand. We recognize that many patients with vasculitis have never heard of their disease before they became sick and that, owing to the relative rarity of some types of vasculitis, most physicians have little experience treating the disorders. Few support groups for vasculitis patients exist, and there is a shortage of literature about these diseases written for lay people. Consequently, most patients find reliable information about vasculitis difficult to come by.

At this Website you will find:

  1. explanations of vasculitis in lay terms
  2. specific discussions of individual diseases
  3. a review of the common therapies for vasculitis
  4. answers to commonly asked questions
  5. information on how to make an appointment to be seen in the Johns Hopkins Vasculitis Center
  6. information about ongoing research at the Johns Hopkins Vasculitis Center
  7. ways in which you can contribute to advancing research and progress in vasculitis.

Please note that this Website is sponsored through the generosity of various friends of the Johns Hopkins Vasculitis Center. We update the Vasculitis Center Website regularly and strive to provide solid, usable information on various types of vasculitis, treatments, and support resources.

Thank you for visiting our Website. We hope you will find it accessible and useful as you learn about these challenging diseases.

Yours truly,

Philip Seo, MD, MHS
Assistant Professor of Medicine
Johns Hopkins University School of Medicine,
Division of Rheumatology
Director, The Johns Hopkins Vasculitis Center

Vasculitis Frequently Asked Questions

What causes vasculitis?

The causes of most forms of vasculitis remain unknown. Infections are strongly suspected of playing a role in in forms such as the association of hepatitis B (a virus) and polyarteritis nodosa, and hepatitis C (another virus) and cryoglobulinemic vasculitis. Bacterial infections have been suspected of playing a possible role in granulomatosis with polyangiitis (GPA, formerly known as Wegener’s) which is the reason that some patients with GPA that is limited to the upper respiratory tract are treated only with an antibiotic, Bactrim (trimethoprim/sulfamethoxazole). A general theory that applies to many types of vasculitis is that the disease results from the occurrence of a particular infection in a person whose genes (and other factors) make him/her susceptible to developing vasculitis.

What is going to happen to me?

The course of vasculitis is often difficult to predict. Some types of vasculitis may occur only once and do not return. Other types are prone to recurrences. For all patients with vasculitis, it is essential to be evaluated by physicians who are experienced in the treatment of these diseases. Vasculitis is treatable, and many patients achieve remissions through treatment. It is important to balance the types of medications necessary to control the disease and the risk of side effects that those medicines often bring. A primary aim of several ongoing new studies in vasculitis is to find drugs that help maintain remission.

Is vasculitis curable?

Most forms of vasculitis are treatable if detected early enough, before substantial organ damage has occurred. While often effective, however, the treatments remain imperfect and require improvement. Further research is needed in all forms of vasculitis. Greater knowledge of these diseases will lead to better treatments and, some day, to cures.

Will my children or other family members get it?

Vasculitis is not contagious. One cannot acquire vasculitis from contact with a vasculitis patient. In addition, despite the fact that genes probably play a role in susceptibility to some forms of vasculitis, it is unusual for vasculitis to occur in more than one member of the same family. Thus, vasculitis is not a heritable disorder. All of these points illustrate the fact that the causes of vasculitis are complex. In all likelihood, patients develop vasculitis because of the simultaneous occurrence of multiple risk factors, most of which remain poorly understood.

Does diet affect vasculitis?

This is one of the most commonly-asked questions by patients with vasculitis. All patients want to do whatever is within their power to help treat their disease. Unfortunately, there is presently no evidence that a person’s diet affects susceptibility to vasculitis, or that consuming or avoiding certain foods or beverages affects the course of the disease. In general, we advocate eating a balanced healthy diet rich in protein and vegetables. Avoidance of excessive empty calories, processed foods, and sugars may be very important, particularly in patients on steroids who are at risk for weight gain.

Will my vasculitis return?

After patients achieve remission from their vasculitis, it is logical for them to wonder if their disease will ever return. The answer, which is often difficult to give with certainty, depends in large part on the patient’s specific type of vasculitis. For example, some types of vasculitis, such as Henoch-Schönlein purpura (HSP) or vasculitis caused by a medication, are often self-limited and resolve on their own. Other forms of vasculitis (e.g., Buerger’s disease, a disease strongly associated with cigarette smoking) resolve with institution of the definitive treatment: smoking cessation.

However,  other forms of vasculitis behave less predictably and never come back in some patients but recur frequently in others. Granulomatosis with polyangiitis (GPA), giant cell arteritis (GCA), Takayasu arteritis, microscopic polyangiitis, and many other types of vasculitis fall into the category of diseases that have periods of quiescence and periods of flare. Disease flares in vasculitis can be mild (rash, minor joint pains) or severe (renal failure, skin ulcers). Flares may occur if medications are discontinued or dosage is lowered. Flare may occur in the context of infection. Often the reason for disease flare is unknown.

At the present time, the ability of doctors to predict who will suffer disease flares and who will maintain in long-term remissions (or be cured) needs refinement. Progress in this area will come through research.

How should I guard against the occurrence of a disease flare?

We believe that several points are worth keeping in mind:

First, the symptoms of flares are usually very similar those experienced at the onset of disease. If headaches signaled the beginning of giant cell arteritis, then the recurrence of headaches may indicate a disease flare. If leg ulcers began as painful red lumps on the leg the first time, then the return of painful red lumps may mean that vasculitis is back. Patients must become experts about their own manifestations of vasculitis so that they can recognize them immediately, consult their doctors, and begin appropriate treatment before serious damage occurs.

Second, we believe that patients truly know and understand their own bodies. It is important to discuss new or changing symptoms with your physicians. Together, patients and physicians can determine if new symptoms truly represent a vasculitis flare or if the cause is something equally as likely (medication side effect, infection, or other common medical issues).

Finally, because vasculitis treatments require careful monitoring by doctors, patients should discuss any changes in treatment with their physicians. Increasing or decreasing medications without consulting a physician may lead to trouble.

Why do I have to have bloodwork checked frequently?

Blood tests are helpful to monitor for the return of vasculitis by keeping a watchful eye on important parameters such as kidney function, liver tests, and markers of inflammation (ESR and CRP). Blood tests are also very important to ensure that medications are not causing any side effects such as liver irritation or low blood counts.

How often should my blood be checked?

This depends on the specific medicine or medicines that you take. Patients on cyclophosphamide (Cytoxan) should have their counts checked every week. Patients on most other kinds of medications used to treat vasculitis (Methotrexate, Azathioprine) usually only need to have their blood work checked monthly. If some laboratory tests are abnormal or nearly so, then more frequent monitoring may be required.

What type of tests do we check?

Regardless of the type of vasculitis and the exact type of medication that a patient takes, similar types of tests are monitored. These tests are:

  1. a complete blood count;
  2. tests of kidney function including a urinalysis; and
  3. liver function tests.

The table below outlines the importance behind checking each of these tests.

Type of TestWhat should be checkedWhy?
Complete Blood Count (“CBC”)
  • White blood cells (WBC)
  • Platelets
  • Hematocrit
  • Low WBC count may lead to infections.
  • Low platelets may cause bleeding.
  • Low hematocrit means insufficient oxygen-carrying capacity of the blood.
Kidney Function
  • Creatinine
  • Blood Urea Nitrogen (BUN)
  • High creatinine and BUN indicate that the kidneys are not performing their blood-cleansing function properly.
Urinalysis
  • Protein Level
  • Red Blood Cells
  • Normal urinalyses have no protein and no blood.
  • The presence of protein and/or blood in the urine may indicate active vasculitis in the kidneys (or damage to the bladder from cyclophosphamide).
Liver Function
  • Albumin
  • Aspartate aminotransferase(AST)
  • Alanine aminotransferase (ALT)
  • Often a good indication of overall health.
  • Elevated AST/ALT levels indicate inflammation in the liver (usually caused by medications).