Journey of Patients With Vasculitis From First Symptom to Diagnosis

Description

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.

Study Start Date

January, 11 2018

Estimated Completion Date

February 2019

Interventions

  • Other: Online Questionnaire

Study ID

University of Pennsylvania -- VCRC5538/V-PPRN4

Status

Recruiting

Trial ID

NCT03410290

Study Type

Observational [Patient Registry]

Trial Phase

N/A

Enrollment Quota

400

Sponsor

University of Pennsylvania

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 -

Gender

All

Ages

N/A

Accepts Healthy Volunteers

No

Study Locations and Contact Information (1)

Study Location Distance Name Phone Email
University of South Florida - Tampa, Florida 986.7 miles Cristina Burroughs None Cristina.Burroughs@epi.usf.edu

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