Impact of Vasculitis on Employment and Income
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT02476292|
Recruitment Status : Completed
First Posted : June 19, 2015
Last Update Posted : January 28, 2016
|Condition or disease||Intervention/treatment|
|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||Other: online questionnaire|
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 :||Observational|
|Actual Enrollment :||426 participants|
|Official Title:||Impact of Vasculitis on Employment and Income. An Online Survey of Participants in the VCRC Patient Contact Registry|
|Study Start Date :||June 2015|
|Actual Primary Completion Date :||January 2016|
|Actual Study Completion Date :||January 2016|
- 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.
- 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.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02476292
|United States, Florida|
|University of South Florida Data Management and Coordinating Center|
|Tampa, Florida, United States, 33612|
|Study Chair:||Christian Pagnoux, MD, MPH, MSc||University of Toronto|
|Study Chair:||Peter A. Merkel, MD, MPH||University of Pennsylvania|
|Study Chair:||Lillian Barra, MD, PhD||University of Western Ontario, Canada|