Impact of Vasculitis on Employment and Income

The purpose of this study is to learn about the impact of vasculitis on employment and income in patients with different systemic vasculitides. All patients enrolled in the Vasculitis Clinical Research Consortium (VCRC) Patient Contact Registry, living in USA or Canada, and followed for more than 1 year since the vasculitis diagnosis will be invited via email to participate in this study, based on an online survey.

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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 Congenital, Hereditary, and Neonatal Diseases and Abnormalities Cryoglobulinemia, Familial Mixed Cryoglobulinemic Vasculitis Eosinophilic Granulomatosis Eye Diseases Genetic Diseases, Inborn Giant Cell Arteritis Granulomatosis with Polyangiitis Hematologic Diseases Hemic and Lymphatic Diseases Hemorrhage Hemorrhagic Disorders Hemostatic Disorders Henoch-schoenlein Purpura Hereditary Autoinflammatory Diseases Hypersensitivity IgA Vasculitis Immune Complex Diseases Immune System Diseases Lung Diseases Lung Diseases, Interstitial Microscopic Polyangiitis Mouth Diseases Nervous System Diseases Panuveitis Pathologic Processes Pathological Conditions, Signs and Symptoms Polyarteritis Nodosa Polyarteritis Nodosa (PAN) 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 Takayasu's Arteritis Temporal Arteritis Urticarial Vasculitis Uveal Diseases Uveitis Uveitis, Anterior Vascular Diseases Vasculitis, Central Nervous System Wegener Granulomatosis

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

University of South Florida Data Management and Coordinating Center

Tampa, Florida, 33612, United States

About this study

All individuals with vasculitis participating in the VCRC contact patient registry, living in the USA or Canada, and with a follow-up period of ≥1 year since the diagnosis of vasculitis will be invited by email to complete an online questionnaire. They will be asked several questions about their disease, their employment and work status before diagnosis and over the course of their disease, their work capacity and the financial impact on their lives.

The survey data will be stored by the Rare Diseases Clinical Research Network's Data Management and Coordinating Center (DMCC) at the University of South Florida. The data will be de-identified. Names or other personal health information will not be collected. If a participant is enrolled in the Vasculitis Patient-Powered Research Network (V-PPRN) University of South Florida (USF) Institutional Review Board Pro00018514, the participant can choose to provide their email address. Upon conclusion of the study period, the data will be sent to the VCRC Principal Investigator and the Protocol 5536 Co-Principal Investigators. All data collected will be sent to the database of Genotypes and Phenotypes (dbGaP) to be stored indefinitely per the Rare Disease Clinical Research Network (RDCRN) Data Sharing Policy.

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: VCRC Patient Contact Registry includes patients with Behcet's disease, CNS vasculitis, Cryoglobulinemic vasculitis (Cryoglobulinemia), eosinophilic granulomatosis with polyangiitis (Churg-Strauss) (CSS), giant cell (temporal) arteritis (GCA), granulomatosis with polyangiitis (Wegener's) (GPA), Henoch-Schönlein purpura (IgA vasculitis), microscopic polyangiitis (MPA), polyarteritis nodosa (PAN), Takayasu arteritis (TAK), and urticarial vasculitis.
Age ≥18 years old
Living in USA or Canada
Vasculitis diagnosis made ≥1 year ago
Language requirements: questionnaire will be in English only

Exclusion criteria

Inability to provide informed consent and complete survey

Treatment and study plan

Online Questionnaire

Other

The online questionnaire includes questions about vasculitis, employment and work status before diagnosis and over the course of the disease, work capacity and the financial impact of vasculitis.

Primary outcomes

Percentages of patients with different types of vasculitis who report negative impact of the disease on employment status, productivity, and income.

Time frame: one day

Self-reported change in employment status, productivity, and income from the time of diagnosis to the present.

Sponsors and collaborators

Lead sponsor

University of South Florida

Other

Collaborators

University of Pennsylvania
University of Toronto
University of Western Ontario, Canada

Registry information

Official study title

Impact of Vasculitis on Employment and Income. An Online Survey of Participants in the VCRC Patient Contact Registry

Important dates

Study start: 2015
Primary completion: 2016
Study completion: 2016
First posted: Jun 19, 2015
Registry last updated: Jan 28, 2016

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.

Completed