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Note: This study is currently only recruiting patients in the hospital.

If you are interested in being notified if this study begins recruiting from the general population, please use the 'I Am Interested' button below.

Are you living with ANCA-Associated Vasculitis (AAV)? Wegener's Granulomatosis? Join the Registry!

The goal of the ANCA-Associated Vasculitis (AAV) Prospective Registry is to understand the experience of patients living with this chronic illness and to identify new biomarkers and management approaches.

3 hours over 5 years
Estimated Time Commitment
Any Sex/Gender, 18-years or older
May Be Eligible
Payment up to $200
May Be Offered
Survey, Blood draw, Registry
May Be Required
 
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This project is not recruiting.

What we are studying

ANCA-associated vasculitis (AAV) is a small-to-medium vessel vasculitis that has a tendency to affect the sinuses, kidneys, lungs, and other major organs. Its manifestations can range from relatively mild to life-threatening. AAV is an umbrella term that includes granulomatosis with polyangiitis (GPA, formerly Wegener’s granulomatosis), microscopic polyangiitis (MPA), as well as eosinophilic granulomatosis with polyangiitis (EGPA). The majority of patients with GPA, MPA, and EGPA have Anti-neutrophil Cytoplasmic Autoantibodies (ANCA).


We plan to prospectively assess outcomes, including response to treatment, disease relapse, development of cardiovascular disease, and death. We also plan to assess complications such as infections and other treatment-related adverse events. Optional repeat blood sample collection further helps us identify new biomarkers to idenitfy disease activity, and assess managment strategies.


Why it is important

For ANCA-associated vasculitis (AAV), patient-reported outcome measures (both general and disease-specific) have not been well studied. Despite important advances in recent years, much remains to be understood about the patient experience with AAV and how we can imporve patient-centered outcomes. To further imporve care, we need to identify new biomarkers and treatments.


What we hope to accomplish

Through this cohort study we hope to develop a registry of patients living with AAV over time to see how their experience changes over time and what factors may be contributing to those changes. We also hope to identify new biomarkers and managment strategies using blood samples that will be collected from some patients.

Principal Investigator

Zachary S Wallace, MD, MSc

Massachusetts General Hospital

Public Profile

Adults (Over the age of 18) with a confirmed diagnosis of ANCA-associated vasculitis.

Patients who have drug induced positive ANCA titer

If enrolled in the ANCA associated vasculitis prospective registry, you will be asked to complete a survey every 6 months for 10 years. Each survey will take approximatley 20 minutes. There is also an optional repeat blood draw aspect to the registry. The blood draws are up to every 3 months and can be completed at MGH main campus or the MGH Waltham location.


Project activities may include:

  • Survey
  • Blood draw
  • Registry

Estimated Time Commitment

3 hours over 5 years


For the completion of the Initial blood draw and baseline-survey you will recieve $25 on a reloadable Advarra visa card. Another $25 will be uploaded to the card for every subsequent quarterly blood draw after the completion of the baseline-survey.


Travel

  • No travel required

Travel and Parking Details


Participating Institutions


Funding Source

  • NIH or Other Federal
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