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| Name | Class |
|---|---|
| Duke University | OTHER |
| University of South Florida | OTHER |
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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
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention | Woman, 18 years of age or older, currently pregnant, and have a diagnosis of vasculitis. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Online questionnaires | Other | Women will be asked to complete questionnaires during their pregnancy and a postpartum questionnaire. |
|
| Measure | Description | Time Frame |
|---|---|---|
| Unique pregnancy characteristics among women with vasculitis. | To understand pregnancy characteristics and outcomes among women with vasculitis using patient-reported questionnaires in each trimester. | Four years |
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Inclusion Criteria:
Women 18 years of age or older with one of the following diseases may take part in the study:
Women must be pregnant (self-report) at the time of enrollment into the registry.
Exclusion Criteria:
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Women with vasculitis who are currently pregnant.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Christine Yeung | Contact | christine.yeung@pennmedicine.upenn.edu | ||
| Carol McAlear, MA | Contact | cmcalear@upenn.edu |
| Name | Affiliation | Role |
|---|---|---|
| Megan Clowse, MD, MPH | Duke University | Study Chair |
| Peter A Merkel, MD, MPH | University of Pennsylvania | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of South Florida Data Management and Coordinating Center | Recruiting | Tampa | Florida | 33612 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 38825354 | Result | Sims CA, Eudy AM, Larson K, Yeung C, Tam H, Kullman J, Borchin RL, Burroughs C, Merkel PA, Clowse MEB; VPREG Collaborative Group. Reproductive Outcomes for Women With Vasculitis. J Rheumatol. 2024 Oct 1;51(10):1003-1008. doi: 10.3899/jrheum.2023-1246. | |
| 38825350 | Result | Sims CA, Perry B, Yeung C, Tam H, Kullman J, Borchin RL, Burroughs C, Merkel PA, Clowse MEB. Exploring Reproductive Experiences With Women Enrolled in the International Vasculitis Pregnancy Registry. J Rheumatol. 2024 Oct 1;51(10):997-1002. doi: 10.3899/jrheum.2023-1055. |
| Label | URL |
|---|---|
| The Vasculitis Patient-Powered Research Network | View source |
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| Vasculitis Pregnancy Registry (VPREG) Information | View source |
| ID | Term |
|---|---|
| D014657 | Vasculitis |
| D001528 | Behcet Syndrome |
| D020293 | Vasculitis, Central Nervous System |
| C565141 | Cryoglobulinemia, Familial Mixed |
| D015267 | Churg-Strauss Syndrome |
| D014890 | Granulomatosis with Polyangiitis |
| D011695 | IgA Vasculitis |
| D055953 | Microscopic Polyangiitis |
| D010488 | Polyarteritis Nodosa |
| D013625 | Takayasu Arteritis |
| D056647 | Systemic Vasculitis |
| ID | Term |
|---|---|
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D009059 | Mouth Diseases |
| D009057 | Stomatognathic Diseases |
| D014606 | Uveitis, Anterior |
| D015864 | Panuveitis |
| D014605 | Uveitis |
| D014603 | Uveal Diseases |
| D005128 | Eye Diseases |
| D056660 | Hereditary Autoinflammatory Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D012873 | Skin Diseases, Genetic |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D017445 | Skin Diseases, Vascular |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D002561 | Cerebrovascular Disorders |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
| D056648 | Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis |
| D006099 | Granuloma |
| D008232 | Lymphoproliferative Disorders |
| D008206 | Lymphatic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D017563 | Lung Diseases, Interstitial |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D011693 | Purpura |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D020141 | Hemostatic Disorders |
| D006474 | Hemorrhagic Disorders |
| D007105 | Immune Complex Diseases |
| D006967 | Hypersensitivity |
| D006470 | Hemorrhage |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D012877 | Skin Manifestations |
| D012816 | Signs and Symptoms |
| D059345 | Cerebral Small Vessel Diseases |
| D001167 | Arteritis |
| D001015 | Aortic Arch Syndromes |
| D001018 | Aortic Diseases |
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