- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT02476292
Impact of Vasculitis on Employment and Income
Impact of Vasculitis on Employment and Income. An Online Survey of Participants in the VCRC Patient Contact Registry
Study Overview
Status
Conditions
Intervention / Treatment
Detailed Description
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.
Study Type
Enrollment (Actual)
Contacts and Locations
Study Locations
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Florida
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Tampa, Florida, United States, 33612
- University of South Florida Data Management and Coordinating Center
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Participation Criteria
Eligibility Criteria
Ages Eligible for Study
Accepts Healthy Volunteers
Genders Eligible for Study
Sampling Method
Study Population
Description
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
Study Plan
How is the study designed?
Design Details
- Time Perspectives: Prospective
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
---|---|---|
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
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Self-reported change in employment status, productivity, and income from the time of diagnosis to the present.
|
one day
|
Collaborators and Investigators
Sponsor
Collaborators
Investigators
- Study Chair: Christian Pagnoux, MD, MPH, MSc, University of Toronto
- Study Chair: Lillian Barra, MD, PhD, University of Western Ontario, Canada
Study record dates
Study Major Dates
Study Start
Primary Completion (Actual)
Study Completion (Actual)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Estimate)
Study Record Updates
Last Update Posted (Estimate)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Additional Relevant MeSH Terms
- Pathologic Processes
- Cardiovascular Diseases
- Vascular Diseases
- Cerebrovascular Disorders
- Brain Diseases
- Central Nervous System Diseases
- Nervous System Diseases
- Skin Diseases
- Respiratory Tract Diseases
- Immune System Diseases
- Autoimmune Diseases of the Nervous System
- Autoimmune Diseases
- Lung Diseases
- Eye Diseases
- Hematologic Diseases
- Hemorrhage
- Hemorrhagic Disorders
- Genetic Diseases, Inborn
- Stomatognathic Diseases
- Mouth Diseases
- Hemostatic Disorders
- Uveitis, Anterior
- Panuveitis
- Uveitis
- Uveal Diseases
- Hereditary Autoinflammatory Diseases
- Skin Diseases, Genetic
- Skin Diseases, Vascular
- Hypersensitivity
- Blood Coagulation Disorders
- Skin Manifestations
- Lung Diseases, Interstitial
- Cerebral Small Vessel Diseases
- Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis
- Immune Complex Diseases
- Aortic Diseases
- Behcet Syndrome
- Purpura
- Giant Cell Arteritis
- Arteritis
- Vasculitis
- Granulomatosis with Polyangiitis
- Microscopic Polyangiitis
- Polyarteritis Nodosa
- Purpura, Schoenlein-Henoch
- Takayasu Arteritis
- Aortic Arch Syndromes
- Systemic Vasculitis
- Vasculitis, Central Nervous System
Other Study ID Numbers
- VCRC 5536
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
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