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Current Opening Studies - Wegener's Granulomatosis and Microscopic Polyangiitis

5505: Longitudinal Protocol for Wegener's Granulomatosis and Microscopic Polyangiitis

Status: Recruiting

Summary:

Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.

In the longitudinal studies, clinical and laboratory information will be collected on patients with vasculitis to study the disease over an extended period of time.  The data from the longitudinal studies will be used by scientists to study the genetics and causes of vasculitis, find new ways to track disease and predict responses, to understand how to treat patients, and much more.

Target Enrollment:

A total of 300 patients with AAV (200 WG, 100 MPA) will be enrolled.

Patients will have disease in various stages and of different duration. Widely accepted diagnostic criteria-as opposed to classification criteria or definitions-have not yet been developed for Wegener's Granulomatosis (WG) and microscopic polyangiitis (MPA). The Wegener's Granulomatosis Etanercept Trial employed a modification of the American College of Rheumatology (ACR) Criteria for the classification of WG in its eligibility criteria.

In summary, in order to be included, WG patients will need to meet at least 2 of the 5 modified ACR Criteria for the classification of WG. MPA patients will need to meet the Chapel Hill Consensus Conference definition of MPA. In addition, in cases of patients diagnosed with either WG or MPA, a lengthy list of mimickers must be excluded.

How to Participate:

In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation.

  • Boston University School of Medicine, Boston, MA
    Gwendolyn Henry
    Study Coordinator
    E-mail: gfhenry@bu.edu
    Phone: 617-414-2509

  • Cleveland Clinic Foundation, Cleveland, Ohio
    Katherine Tuthill
    Study Coordinator
    E-mail: tuthillk@ccf.org
    Phone: 216-444-5257

  • Mayo Clinic College of Medicine, Rochester, MN
    Kathy Mieras
    Lead Study Coordinator/Project Manager
    E-mail: Mieras.kathleen@mayo.edu
    Phone: 507-284-9187

  • Johns Hopkins Vasculitis Center, Baltimore, MD
    Cynthia Bethea
    Study Coordinator
    E-mail: cbethea3@jhmi.edu
    Phone: 410-550-4390

  • St. Joseph's Healthcare, Hamilton, ON
    Sandra Messier, RCT
    Vascular Medicine Research Coordinator
    E-mail: smessier@stjoes.ca
    Phone: 905-522-1155 Ext. 35873

  • University of Toronto Mount Sinai Hospital, Toronto, ON
    Sara Sutherland, RN BScN
    Study Coordinator
    E-mail: SWebster2@mtsinai.on.ca

    Deborah Weber, RN, CCRC
    Study Coordinator
    E-mail: dweber@mtsinai.on.ca

    Phone: 416-586-8616

 

 

Join the Contact Registry for: Wegener’s Granulomatosis (WG)

Longitudinal Study Flyer For: Wegeners Granulomatosis and Microscopic Polyangiitis [PDF]

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Join the VCRC Contact Registry