Journey of Patients With Vasculitis From First Symptom to Diagnosis
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ClinicalTrials.gov Identifier: NCT03410290 |
Recruitment Status :
Completed
First Posted : January 25, 2018
Last Update Posted : June 6, 2018
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Condition or disease | Intervention/treatment |
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Vasculitis Systemic Vasculitis Behcet's Disease CNS Vasculitis Cryoglobulinemic Vasculitis Eosinophilic Granulomatous Vasculitis Temporal Arteritis Giant Cell Arteritis Granulomatosis With Polyangiitis Wegener Granulomatosis Henoch Schonlein Purpura IgA Vasculitis Microscopic Polyangiitis Polyarteritis Nodosa Takayasu Arteritis Urticarial Vasculitis | Other: Online Questionnaire |
Study Type : | Observational [Patient Registry] |
Actual Enrollment : | 456 participants |
Observational Model: | Cohort |
Time Perspective: | Prospective |
Target Follow-Up Duration: | 1 Day |
Official Title: | The Journey of Patients With Vasculitis From First Symptom to Diagnosis |
Actual Study Start Date : | January 11, 2018 |
Actual Primary Completion Date : | May 21, 2018 |
Actual Study Completion Date : | May 21, 2018 |

Group/Cohort | Intervention/treatment |
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Group 1
The online questionnaire includes questions about factors that impacted a patients diagnosis of vasculitis.
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Other: Online Questionnaire
The online questionnaire includes questions about factors that impacted a patients diagnosis of vasculitis. |
- Percentages of patients with different types of vasculitis who report a delay in their disease diagnosis from initial symptoms of vasculitis to establishment of a diagnosis of vasculitis, stratified by disease type. [ Time Frame: 1 day ]Analysis of how people fill in the questionnaire to determine the time from onset of symptoms of vasculitis to the first encounter with a healthcare provider for evaluation of those symptoms.

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Ages Eligible for Study: | Child, Adult, Older Adult |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
Inclusion Criteria:
- Diagnosis of a systemic vasculitis: The V-PPRN includes patients with self-reported Behçet's disease, central nervous system vasculitis, cryoglobulinemic vasculitis, eosinophilic granulomatosis with polyangiitis (Churg-Strauss Syndrome, CSS), giant cell (temporal) arteritis (GCA), granulomatosis with polyangiitis (Wegener's, GPA), IgA vasculitis (Henoch-Schönlein Purpura), microscopic polyangiitis (MPA), polyarteritis nodosa (PAN), Takayasu's arteritis (TAK), and urticarial vasculitis.
- Language requirements: questionnaire will be in English only
Exclusion Criteria:
- Inability to provide informed consent and complete survey in English
- Patients with a diagnosis of "other" type of vasculitis
- Patients with a "missing" diagnosis -

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03410290
United States, Florida | |
University of South Florida | |
Tampa, Florida, United States, 33612 |
Study Chair: | Antoine Sreih, MD | University of Pennsylvania | |
Study Director: | Peter A Merkel, MD, MPH | University of Pennsylvania |
Responsible Party: | Peter Merkel, Chief, Division of Rheumatology, Professor of Medicine and Epidemiology, University of Pennsylvania |
ClinicalTrials.gov Identifier: | NCT03410290 |
Other Study ID Numbers: |
VCRC5538/V-PPRN4 |
First Posted: | January 25, 2018 Key Record Dates |
Last Update Posted: | June 6, 2018 |
Last Verified: | June 2018 |
Individual Participant Data (IPD) Sharing Statement: | |
Plan to Share IPD: | No |
Studies a U.S. FDA-regulated Drug Product: | No |
Studies a U.S. FDA-regulated Device Product: | No |
Polymyalgia Rheumatica Behcet Syndrome Granulomatosis with Polyangiitis Giant Cell Arteritis Microscopic Polyangiitis Vasculitis, Central Nervous System Vasculitis Arteritis Systemic Vasculitis Takayasu Arteritis Aortic Arch Syndromes Purpura, Schoenlein-Henoch Polyarteritis Nodosa Churg-Strauss Syndrome Purpura |
Blood Coagulation Disorders Hematologic Diseases Hemorrhage Pathologic Processes Skin Manifestations Vascular Diseases Cardiovascular Diseases Mouth Diseases Stomatognathic Diseases Uveitis, Anterior Panuveitis Uveitis Uveal Diseases Eye Diseases Hereditary Autoinflammatory Diseases |