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

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 426 (actual)
• Sponsor: University of South Florida · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

Summary

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.

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.

Conditions

• Vasculitis
• Systemic Vasculitis
• Behcet's Disease
• CNS Vasculitis
• Cryoglobulinemic Vasculitis
• Eosinophilic Granulomatosis
• Temporal Arteritis
• Wegener Granulomatosis
• Henoch-Schoenlein Purpura
• Microscopic Polyangiitis
• Polyarteritis Nodosa (PAN)
• Takayasu's Arteritis
• Urticarial Vasculitis

Interventions

Type	Name	Description
OTHER	online questionnaire	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.

Timeline

• Start date: 2015-06-01
• Primary completion: 2016-01-01
• Completion: 2016-01-01
• First posted: 2015-06-19
• Last updated: 2016-01-28

Locations

1 site across 1 country: United States