Saturday, June 4, 2011

Testing, testing, testees wanted!

I was perusing the intrawebs as I am known to do sometimes and I came across some interesting factoids on one of the vasculitis pages I frequently lurk.
There's a VCRC Genetic Repository study currently going on- they need something like 1300 participants from several different types of vasculitis: Churg-Strauss syndrome (CSS), giant cell arteritis (GCA), microscopic polyangiitis (MPA), polyarteritis nodosa (PAN), Takayasu's arteritis (TAK), and Wegener's granulomatosis (WG). They are looking for genetic materials from patients in the hopes that they can find some king of genetic link for these diseases. As of right now, there is no known cause for vasculitis.
Study Name: 5510 - VCRC Genetic Repository One-Time DNA Collection Protocol

  • VCRC Genetic Repository - Recruiting
    The Vasculitis Clinical Research Consortium is pleased to let you know the Mayo Clinic, Rochester, MN, and Johns Hopkins Vasculitis Center, Baltimore, MD is now enrolling patients for our study: VCRC Genetic Repository One Time DNA Protocol.

    About this study ~
    This update also provides information such as a study summary, eligibility criteria,...
  • Boston University School of Medicine (VCRC)
  • Boston, Massachusetts Principal Investigator: Peter Merkel, MD, MPH Contact Person: Manuella Clark-Cotton Office: 617-414-2509 Email:
  • Johns Hopkins University (VCRC)
  • Baltimore, Maryland Principal Investigator: Philip Seo, MD, MHS Contact Person: Alexander Pinachos Office: 410-550-4580 Email:
  • Mayo Clinic (VCRC)
  • Rochester, Minnesota Principal Investigator: Ulrich Specks, MD Contact Person: Sara Biorn Office: 507-284-4862 Email:
  • Mount Sinai Hospital, Toronto (VCRC)
  • Toronto, Ontario Canada Principal Investigator: Simon Carette, MD Contact Person: Julia Farquharson Office: 416-586-8616 Email:
  • St. Joseph's Hospital, Toronto (VCRC)
  • Hamilton, Ontario Canada Principal Investigator: Nader Khalidi, MD Contact Person: Sandra Messier, RCT Office: 905-522-1155 x 35873 Email:
  • University of Pittsburgh (VCRC)
  • Pittsburgh, Pennsylvania Principal Investigator: Kathleen Maksimowicz-McKinnon, D.O. Contact Person: Dawn McBride, RN, BA Office: 412-586-3545 Email:
  • University of Utah (VCRC)
  • Salt Lake City, Utah Principal Investigator: Curry Koening, MD, MS Contact Person: Julieanne Nielsen, BS Office: 801-585-0798 Email: I emailed the center closest to me, but they said that I would need to transfer my care to their clinc (there is also a longitudinal study that they are doing) which is not something I want to do. My rheumy's have been with me since the beginning and I am responding well to their prescribed treatments. I am going to email them back to let them know I was only interested in the genetic repository. The closer they come to finding a cause means that they are that much closer to finding a cure. All info on the study retrieved from the Vasculitis Foundation on facebook.    

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