Impact of Vasculitis on Employment and Income
| Status: | Completed |
|---|---|
| Conditions: | Cardiology, Cardiology, Cardiology, Cardiology, Cardiology |
| Therapuetic Areas: | Cardiology / Vascular Diseases |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/21/2016 |
| Start Date: | June 2015 |
| End Date: | January 2016 |
Impact of Vasculitis on Employment and Income. An Online Survey of Participants in the VCRC Patient Contact Registry
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.
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.
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.
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.
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
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