Journey of Patients With Vasculitis From First Symptom to Diagnosis

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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Key information

Conditions

Vasculitis Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis Aortic Arch Syndromes Aortic Diseases Arteritis Autoimmune Diseases Autoimmune Diseases of the Nervous System Behcet Syndrome Behcet's Disease Blood Coagulation Disorders Brain Diseases CNS Vasculitis Cardiovascular Diseases Central Nervous System Diseases Cerebral Small Vessel Diseases Cerebrovascular Disorders Churg-Strauss Syndrome Congenital, Hereditary, and Neonatal Diseases and Abnormalities Cryoglobulinemia, Familial Mixed Cryoglobulinemic Vasculitis Eosinophilic Granulomatous Vasculitis Eye Diseases Genetic Diseases, Inborn Giant Cell Arteritis Granuloma Granulomatosis With Polyangiitis Hematologic Diseases Hemic and Lymphatic Diseases Hemorrhage Hemorrhagic Disorders Hemostatic Disorders Henoch Schonlein Purpura Hereditary Autoinflammatory Diseases Hypersensitivity IgA Vasculitis Immune Complex Diseases Immune System Diseases Lung Diseases Lung Diseases, Interstitial Lymphatic Diseases Lymphoproliferative Disorders Microscopic Polyangiitis Mouth Diseases Nervous System Diseases Panuveitis Pathologic Processes Pathological Conditions, Signs and Symptoms Polyarteritis Nodosa Purpura Respiratory Tract Diseases Signs and Symptoms Skin Diseases Skin Diseases, Genetic Skin Diseases, Vascular Skin Manifestations Skin and Connective Tissue Diseases Stomatognathic Diseases Systemic Vasculitis Takayasu Arteritis Temporal Arteritis Urticarial Vasculitis Uveal Diseases Uveitis Uveitis, Anterior Vascular Diseases Vasculitis, Central Nervous System Wegener Granulomatosis

Sex eligibility

All sexes

Study type

Observational

Primary location

University of South Florida

Tampa, Florida, 33612, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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 -

Treatment and study plan

Online Questionnaire

Other

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

Primary outcomes

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.

Sponsors and collaborators

Lead sponsor

University of Pennsylvania

Other

Registry information

Official study title

The Journey of Patients With Vasculitis From First Symptom to Diagnosis

Important dates

Study start: 2018
Primary completion: 2018
Study completion: 2018
First posted: Jan 25, 2018
Registry last updated: Jun 6, 2018

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

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