Giant Cell Arteritis Clinical Trial
Official title:
Educational Needs of Patients With Systemic Vasculitis- an International Survey
A cross-sectional study design and online questionnaire was used to assess the informational needs of patients with several different types of systemic vasculitis. Patients were recruited from within the Vasculitis Clinical Research Consortium (VCRC) online Patient Contact Registry1. Survey responses from participants in the VCRC Patient Contact Registry were compared to responses from a similar survey recently administered to patients within a United Kingdom (UK) based vasculitis support group (Vasculitis UK).
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: Behçets disease,
Churg-Strauss Syndrome, CNS Vasculitis, Giant Cell Arteritis, granulomatosis with
polyangiitis (Wegener's granulomatosis), Henoch-Schöenlein Purpura, Microscopic
Polyangiitis, Polyarteritis Nodosa, or Takayasu's Arteritis. 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, they were directed to the online
questionnaire.
When completing the questionnaire, the patients were asked a series of questions. The
questionnaire content was included as an appendix. The online questionnaire version was
thoroughly tested for usability.
It was expected that most participants wouldrequire approximately 10-15 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 were not collected.
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Observational Model: Cohort, Time Perspective: Cross-Sectional
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