5535: VCRC Validation of Patient-Reported Diagnostic Data

Status: Closed to Accrual

For Diseases

  • Behçet's disease
  • Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss)
  • Giant Cell Arteritis
  • Granulomatosis with Polyangiitis (Wegener's)
  • Microscopic Polyangiitis
  • Polyarteritis Nodosa
  • Takayasu's Arteritis

Background

Vasculitis is a rare condition causing inflammation of blood vessels. Patients with vasculitis have previously registered in the Vasculitis Clinical Research Consortium (VCRC) Contact Registry. If someone provided his or her e-mail address, a questionnaire about his or her disease was sent to him or her to answer. This questionnaire helps doctors studying vasculitis learn more about how people have been diagnosed with vasculitis and what medications they have been given to treat his or her vasculitis.

The purpose of this study is to learn how adequate the questions that the VCRC asked the Contact Registry patients to answer are in evaluating the type and extent of his or her vasculitis. This is called a validation study. This lets us know whether these questions are a good means of obtaining information from you through the internet about your vasculitis, or whether we need to work further at improving the quality and content of the internet VCRC Registry questionnaire.

This study will send questionnaires via e-mail to those patients in the VCRC Contact Registry. Patients will then take these questionnaires to the doctor treating his or her vasculitis to complete. The doctor will then fax the questionnaire back to us. We hope to receive 140 completed questionnaires back.

About this Study

This is a questionnaire survey. Participants will be able to print out or email the main physician who treats their vasculitis the questionnaire to complete for this study. The physician will fax the completed questionnaire to the VCRC after completion.

Target Enrollment:

To be eligible to participate, you must:

  • Be an individual with one of the following:
    • Behçet's disease
    • Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss)
    • Giant Cell Arteritis
    • Granulomatosis with Polyangiitis (Wegener's)
    • Microscopic Granulomatosis
    • Polyarteritis Nodosa
    • Takayasu's Arteritis

You are not eligible to participate if:

  • You are unable to provide informed consent and complete the survey
  • Your diagnosis of vasculitis has not been confirmed by a doctor
  • The doctor treating your vasculitis does not complete the survey.

How do I join the VIP Study?
You can only join this study through a personalized link. This link has been sent to the email address you provided upon joining the VCRC Contact Registry.

 

If you have any questions about this study, you may contact Jennifer L. Harris, MSPH, CCRP.