Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
280 participants
OBSERVATIONAL
2015-07-31
2016-12-31
Brief Summary
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Detailed Description
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Quality of life can be measured by questionnaires called "patient reported outcome measures" (PROM). What is a patient-reported outcome? Patient-reported outcomes, or PROs, are patients' feedback on what they are feeling or what they are able to do as participants are dealing with a chronic disease . Patient-reported outcomes are important because they provide doctors and researchers information about patients' quality of life. Questionnaires can be designed to measure specific PROs that are of specific importance to a disease and can provide much needed information on evaluating the effectiveness of health care. The aim of this survey is to develop a disease specific patient reported outcome measure, or PROM, for patients with AAV.
A small group of Investigators and Patient-Partners developed this survey for people with ANCA-associated vasculitis (the AAV-PRO). Investigators will invite patients with AAV to complete the questionnaire they have designed, called the AAV-PRO. By analysing how people fill in the questionnaire, Investigators will be able to find out how well the questions work, and whether they need to ask all of them.
Conditions
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Study Design
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OTHER
PROSPECTIVE
Study Groups
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Intervention
The online questionnaire includes questions about how ANCA-associated vasculitis effects patients quality of life.
Online questionnaire
Interventions
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Online questionnaire
Eligibility Criteria
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Inclusion Criteria
* Patients greater than 18 years of age
* Diagnosis of ANCA-associated vasculitis including: Eosinophilic Granulomatosis with Polyangiitis (also called Churg-Strauss Syndrome), Granulomatosis with Polyangiitis (also called Wegener's granulomatosis or GPA), Microscopic Polyangiitis (MPA)
18 Years
FEMALE
No
Sponsors
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University of Oxford
OTHER
University of South Florida
OTHER
University of Pennsylvania
OTHER
Responsible Party
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Principal Investigators
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Joanna Robson, MD
Role: PRINCIPAL_INVESTIGATOR
University of Oxford
Peter A Merkel, MD, MPH
Role: STUDY_DIRECTOR
University of Pennsylvania
Locations
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University of South Florida
Tampa, Florida, United States
University of Pennsylvania
Philadelphia, Pennsylvania, United States
Countries
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Related Links
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V-PPRN Study Overview
Other Identifiers
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VCRC 5537
Identifier Type: -
Identifier Source: org_study_id
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