Vasculitis Illness Perception (VIP) Study
Vasculitis Illness Perception (VIP) Study
The purpose of this study is to learn about how patients with vasculitis think about their
 illness and to assess to what extent patient perceptions of illness are associated with
 physical, mental, and social functioning
All patients enrolled in the Vasculitis Clinical Research Consortium's Contact Registry were
 invited via email to participate in this study. The Contract Registry includes people who
 self-identify as having one of the following types of vasculitis: granulomatosis with
 polyangiitis (Wegener's), microscopic polyangiitis, Churg-Strauss syndrome, polyarteritis
 nodosa, Takayasu's arteritis, giant cell arteritis, Behcet's disease, Henoch-Schöenlein
 purpura, or CNS vasculitis. People voluntarily enroll in this Registry with the understanding
 that they will receive information about clinical studies for which they might be eligible.
 The introductory email included basic information about the study and all of the required
 elements for informed consent in a brief format. Once participants agreed to participate in
 the study, then they were directed to the online questionnaire.

 When completing the questionnaire, patients were asked a series of questions. Some of the
 follow-up questions depended on initial answers. The questionnaire content was included as an
 appendix. The online questionnaire version was thoroughly tested for usability.

 It was expected that most participants would require approximately 20-30 minutes to complete
 the questionnaire.

 The survey data is stored by the Rare Diseases Clinical Research Network Data Management and
 Coordinating Center (DMCC) at the University of South Florida. The data is de-identified.
 Names or other personal health information are not be collected.
Inclusion Criteria:

 -  Enrolled in VCRC Contact Registry

 -  Patient reported diagnosis of granulomatosis with polyangiitis (Wegener's
 granulomatosis), Microscopic Polyangiitis, Churg-Strauss Syndrome, Polyarteritis
 Nodosa, Giant Cell Arteritis, Takayasu's Arteritis, Henoch-Schöenlein Purpura, Behçets
 disease, and CNS Vasculitis

 -  18 years of age or older

 -  English speaking

 Exclusion Criteria:

 -  Inability to provide informed consent and complete survey