Journey of Patients With Vasculitis From First Symptom to Diagnosis

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

456 participants

Study Classification

OBSERVATIONAL

Study Start Date

2018-01-11

Study Completion Date

2018-05-21

Brief Summary

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This study seeks to understand the journey that patients eventually are diagnosed with vasculitis experience in the period prior to their formal diagnosis by a healthcare provider. Data elements of interest include average time from the onset of the first symptoms to the time a diagnosis of vasculitis is confirmed. Other aims include identifying factors associated with the time to diagnosis. These factors will be divided into: a) intrinsic factors, or so-called "patient-related factors", such as the type of vasculitis symptoms, patient demographics, socioeconomic status, patients' beliefs regarding the etiology of their symptoms, and other factors, and b) extrinsic factors, or "professional/health system factors", such as healthcare access, referral patterns, testing patterns, and other factors. Understanding such factors can guide future efforts to shorten delays in diagnosis and thereby improve outcomes. All analyses will be done for the population of patients with vasculitis as a whole and by individual types of vasculitis.

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Detailed Description

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Conditions

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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

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Group 1

The online questionnaire includes questions about factors that impacted a patients diagnosis of vasculitis.

Online Questionnaire

Intervention Type OTHER

The online questionnaire includes questions about factors that impacted a patients diagnosis of vasculitis.

Interventions

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Online Questionnaire

The online questionnaire includes questions about factors that impacted a patients diagnosis of vasculitis.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

1. 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.
2. Language requirements: questionnaire will be in English only

Exclusion Criteria

1. Inability to provide informed consent and complete survey in English
2. Patients with a diagnosis of "other" type of vasculitis
3. Patients with a "missing" diagnosis -

Eligible Sex

ALL

Accepts Healthy Volunteers

No