Giant Cell Arteritis Clinical Trial
Official title:
Illness Perception, Fatigue, and Function in Systemic Vasculitis (The VCRC Vasculitis 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.
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Observational Model: Cohort, Time Perspective: Cross-Sectional
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