VCRC Patient Contact Registry Patient-Reported Data Validation Study
VCRC Patient Contact Registry Patient-Reported Data Validation Study
The purpose of this study is to provide validation of patient-reported data in the VCRC
 Patient Contact Registry by comparing patient-reported data with data provided by the
 physician who is the primary provider caring for the patient's vasculitis. Patients enrolled
 in the Patient Contact Registry with Behcet's disease, eosinophilic granulomatosis with
 polyangiitis (Churg-Strauss) (EGPA), giant cell arteritis (GCA), granulomatosis with
 polyangiitis (Wegener's) (GPA), microscopic polyangiitis (MPA), polyarteritis nodosa (PAN),
 and Takayasu's arteritis (TAK) were invited via email to participate in this study.
Via email, consent was obtained from at least 20 randomly selected patients with the seven
 forms of vasculitis detailed above in the VCRC Patient Contact Registry who have completed
 the Diagnostic Questionnaire. The form was sent in PDF format to the patient, who either
 printed out or emailed the form to his or her primary vasculitis provider to complete. This
 form included the same questions in the patient questionnaire, with minor reformatting and a
 few expanded details to verify the patient-provided data (please see appendix B). If the 20
 questionnaires are not returned one month after the initial recruitment email to the Patient
 Contact Registry participants, 20 additional participants with the seven forms of vasculitis
 will be selected randomly and will be asked to participate in this study. The survey data is
 stored by the Rare Diseases Clinical Research Network's (RDCRN) 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. Upon conclusion of the study
 period, the data will be sent to Dr. Kathleen McKinnon. All data collected will be sent to
 the database of Genotypes and Phenotypes (dbGaP) to be stored indefinitely.
Inclusion Criteria:

 -  At least 20 patients with each of the following self-identified diagnoses in the VCRC
 Patient Contact Registry: Behçet's disease, EGPA, GCA, GPA, MPA, PAN, and TAK who have
 completed the online questionnaires.

 Exclusion Criteria:

 -  Inability to provide informed consent and complete survey

 -  Patients whose diagnosis of vasculitis was not confirmed by a physician

 -  Patients who did not complete the initial questionnaire in its entirety