Impact of Vasculitis on Employment and Income
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.
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.
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