Vasculitis Pregnancy Registry

  • STATUS
    Recruiting
  • End date
    Dec 27, 2023
  • participants needed
    100
  • sponsor
    University of Pennsylvania
Updated on 27 April 2021
vasculitis
purpura
polyarteritis nodosa
takayasu's arteritis
wegener's granulomatosis
churg-strauss syndrome
microscopic polyangiitis
arteritis
granulomatosis
behcet's disease
urticarial vasculitis
cryoglobulinemic vasculitis
central nervous system vasculitis
iga vasculitis
eosinophilic granulomatosis

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.

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.

Details
Condition Cerebral Vasculitis, Behcet's Syndrome, Vasculitis, Vascular Diseases, Wegener's Granulomatosis, Polyarteritis Nodosa, Pulseless Disease, Systemic Vasculitis, Churg-Strauss Syndrome, Microscopic Polyangiitis, Allergic Purpura, Eosinophilic Granulomatosis With Polyangiitis, Granulomatosis With Polyangiitis, Cryoglobulinemic Vasculitis, IgA Vasculitis, Urticarial Vasculitis, takayasu's arteritis, central nervous system vasculitis, behcet's disease
Treatment Online questionnaires
Clinical Study IdentifierNCT02593565
SponsorUniversity of Pennsylvania
Last Modified on27 April 2021

Eligibility

Yes No Not Sure

Inclusion Criteria

Women 18 years of age or older with one of the following diseases may take part in the
study
Behcet's disease
CNS vasculitis
cryoglobulinemic vasculitis
eosinophilic granulomatosis with polyangiitis (Churg-Strauss)
granulomatosis with polyangiitis (Wegener's)
IgA vasculitis (Henoch-Schoenlein purpura)
microscopic polyangiitis
polyarteritis nodosa
Takayasu's arteritis
urticarial vasculitis
Women must be pregnant (self-report) at the time of enrollment into the registry

Exclusion Criteria

Non-English speaking, with the exception of people who speak Spanish, Portuguese, Italian, or Turkish
Unable to provide consent
Clear my responses

How to participate?

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What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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