Journey of Patients With Vasculitis From First Symptom to Diagnosis

Completed

Conditions studied: 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

In brief

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.

Key facts

Study ID

NCT03410290

Run by

University of Pennsylvania

People needed

456

Starts

2018-01-11

Expected to finish

2018-05-21

Last updated by the study team

2018-06-06

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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

You may not qualify if…

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

Where it is running

• University of South Florida — Tampa, Florida, United States

Full record on ClinicalTrials.gov

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