Impact of Vasculitis on Employment and Income

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Brief Title

Impact of Vasculitis on Employment and Income

Official Title

Impact of Vasculitis on Employment and Income. An Online Survey of Participants in the VCRC Patient Contact Registry

Brief 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.
    


Study Type

Observational


Primary Outcome

Percentages of patients with different types of vasculitis who report negative impact of the disease on employment status, productivity, and income.


Condition

Vasculitis

Intervention

online questionnaire


Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information


Recruitment Status

Other

Estimated Enrollment

426

Start Date

June 2015

Completion Date

January 2016

Primary Completion Date

January 2016

Eligibility Criteria

        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
      

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Christian Pagnoux, MD, MPH, MSc, , 

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT02476292

Organization ID

VCRC 5536


Responsible Party

Sponsor

Study Sponsor

University of South Florida

Collaborators

 University of Western Ontario, Canada

Study Sponsor

Christian Pagnoux, MD, MPH, MSc, Study Chair, University of Toronto


Verification Date

January 2016