Behcet's Disease, Churg-Strauss Syndrome (CSS), CNS Vasculitis, Cryoglobulinemic Vasculitis, Eosinophilic Granulomatosis With Polyangiitis (EGPA), Granulomatosis With Polyangiitis (GPA), Henoch-Schoenlein Purpura (HSP), IgA Vasculitis, Microscopic Polyangiitis (MPA), Polyarteritis Nodosa (PAN), Systemic Vasculitis, Takayasu Arteritis (TAK), Urticarial Vasculitis, Vasculitis, Wegener's Granulomatosis
Conditions
Brief summary
The purpose of this study is to learn about the experience of women with vasculitis who become pregnant. In particular, the study will consist of several online surveys to assess 1. each woman's vasculitis severity and pregnancy-related experiences, and 2. pregnancy outcomes.
Detailed description
The study will consist of several on-line surveys to assess each woman's vasculitis severity, pregnancy-related experiences, and pregnancy outcomes. Participants will be asked to complete questionnaires at study entry, during the second trimester, during the third trimester, and postpartum. Investigators estimate that it will take approximately 20 minutes to complete each survey. The survey is available in Spanish, Portuguese, Italian, and Turkish. All women enrolled in the Vasculitis Patient-Powered Research Network (VPPRN) (with specified disease, sex, and age inclusion criteria described below) will be invited via email to participate in this on-line study. The survey data will be stored by the Data Management and Coordinating Center (DMCC) at the University of South Florida. Upon conclusion of the study period, the data will be sent to the Study Chairs.
Interventions
Women will be asked to complete questionnaires during their pregnancy and a postpartum questionnaire.
Sponsors
University of Pennsylvania
Duke University
University of South Florida
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
FEMALE
Age
18 Years to 50 Years
Healthy volunteers
No
Inclusion criteria
1. Women 18 years of age or older with one of the following diseases may take part in the study: * Behçet's disease; * Central nervous system (CNS) vasculitis; * Cryoglobulinemic vasculitis (Cryoglobulinemia); * Eosinophilic granulomatosis with polyangiitis (also called Churg-Strauss Syndrome); * Giant Cell (Temporal) Arteritis (GCA); * Granulomatosis with polyangiitis (also called Wegener's); * IgA vasculitis (Henoch-Schoenlein purpura); * Microscopic polyangiitis (MPA); * Polyarteritis nodosa (PAN); * Takayasu's arteritis (TAK); * Urticarial vasculitis; * Other/Suspected Diagnosis. 2. Women must be pregnant (self-report) at the time of enrollment into the registry.
Exclusion criteria
1. Non-English speaking, with the exception of people who speak Spanish, Portuguese, Italian, or Turkish. 2. Unable to provide consent.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Unique pregnancy characteristics among women with vasculitis. | Four years | To understand pregnancy characteristics and outcomes among women with vasculitis using patient-reported questionnaires in each trimester. |
Countries
United States
Contacts
CONTACTChristine Yeung
CONTACTCarol McAlear, MA
STUDY_CHAIRMegan Clowse, MD, MPH
Duke University
STUDY_CHAIRPeter A Merkel, MD, MPH
University of Pennsylvania
Outcome results
None listed