Status: Closed to Accrual
The purpose of this study is to learn about how patients with vasculitis think about their illness.
Behçets disease, Churg-Strauss Syndrome, CNS Vasculitis, Drug-induced Vasculitis, Giant Cell (Temporal) Arteritis, Granulomatosis with Polyangiitis (Wegener’s granulomatosis), Henoch-Schöenlein Purpura, Kawasaki Disease, Microscopic Polyangiitis, Polyarteritis Nodosa, Takayasu’s Arteritis
Illness perceptions are the organized beliefs that patients have about their illness. There are examples throughout the medical literature which highlight that the way patients think about an illness is not necessarily the way health care providers think about the same illness. Therefore, understanding a disease from the patient’s perspective can often provide new insights into the disease.
Vasculitis is a group of rare diseases involving inflammation of the arteries and other tissues. Although much progress has been made towards finding better medical therapies to treat vasculitis, patients with vasculitis often must manage substantial disease and treatment burdens. Despite the burdens of disease and treatment, patient’s beliefs about vasculitis (illness perceptions) have not been comprehensively studied.
This study is important because it will provide information about how patients with vasculitis think about the disease. Understanding vasculitis from the patient’s perspective will provide novel insights into these complicated diseases that will be of great value to health care providers who care for patients with vasculitis.
About this Study
All patients enrolled in the Vasculitis Clinical Research Consortium’s Contact Registry will be invited via email to participate in this study. The Contract Registry includes people who self-identify as having a type of vasculitis including: Behçets disease, Churg-Strauss Syndrome, CNS Vasculitis, Drug-induced Vasculitis, Giant Cell (Temporal) Arteritis, Granulomatosis with Polyangiitis (Wegener’s granulomatosis), Henoch-Schöenlein Purpura, Kawasaki Disease, Microscopic Polyangiitis, Polyarteritis Nodosa, and 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 will include basic information about the study and all of the required elements for informed consent in a brief format. Once participants agree to participate in the study, then they will be directed to the online questionnaire.
When completing the questionnaire, the patients will be asked a series of questions. The follow-up questions will depend on initial answers. It is expected that most participants will require 20-30 minutes to complete the questionnaire.
The survey data will be stored by the Rare Diseases Clinical Research Network 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.
Target Enrollment: 2000
To be eligible to participate, you must:
- Be enrolled in the VCRC Contact Registry
- Be a patient with a diagnosis of Behçets disease, Churg-Strauss Syndrome, CNS Vasculitis, Giant Cell (Temporal) Arteritis, Granulomatosis with Polyangiitis (Wegener’s granulomatosis), Henoch-Schöenlein Purpura, Microscopic Polyangiitis, Polyarteritis Nodosa, or Takayasu’s Arteritis.
- Be 18 years of age or older
- Be English speaking
You are not eligible to participate if:
- You are unable to provide informed consent and complete the survey