Educational Needs of Patients With Systemic Vasculitis
Educational Needs of Patients With Systemic Vasculitis
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.
Inclusion Criteria:

 -  Enrolled in the VCRC Contact Registry

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

 -  18 years of age or older

 -  English speaking

 Exclusion Criteria:

 -  Inability to provide informed consent and complete survey