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!
This project is not recruiting.
Overview
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.
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Principal Investigator
Who can participate
Adults (Over the age of 18) with a confirmed diagnosis of ANCA-associated vasculitis.
Who cannot participate
Patients who have drug induced positive ANCA titer
What you may be asked to do
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
What You May Get
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.
Location
Travel
- No travel required
Travel and Parking Details
Additional Information
Funding Source
- NIH or Other Federal