NIH Renews Vasculitis Clinical Research Consortium Grant

November 2009

The Vasculitis Clinical Research Consortium (VCRC) grant application for renewal of support for the Consortium was funded again for another five year period by the National Institutes of Health, through the Office of Rare Diseases and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

 Dr. Peter Merkel, of Boston University School of Medicine, is the Principal Investigator for the VCRC, along with Co-Investigators from the Cleveland Clinic, Johns Hopkins, the Mayo Clinic, and Mount Sinai and St. Joseph’s Hospitals in Toronto. The Consortium is currently expanding with two new sites opening, one at the University of Pittsburgh, and the other at the University of Utah.

 The VCRC is conducting Longitudinal/Observational Studies to identify biomarkers for disease risk, disease severity and activity, and clinical outcomes in six types of vasculitis - Giant Cell Arteritis, Takayasu’s Arteritis, Polyarteritis Nodosa, Wegener’s Granulomatosis, Microscopic Polyangiitis, and Churg Strauss Syndrome. There are 96 Churg Strauss patients currently enrolled in this study. In addition to the Longitudinal Studies, the VCRC is conducting three clinical trials for Giant Cell Arteritis, Takayasu’s Arteritis, and Wegener’s Granulomatosis.

The VCRC Patient Contact Registry is a method for patients with vasculitis to register with the VCRC so that they will be notified of new clinical research studies conducted by the VCRC, including possible future online research projects. The contact registry is free of charge and anonymous, and patients can register by using a paper form, by calling a toll-free number (866-313-9879), or online by clicking “Join the VCRC Contact Registry". 

A Challenge to Churg Strauss patients
It is imperative for Churg Strauss patients to support research in whatever ways possible since the disease is so rare, making it difficult to find a large enough group of patients to study. Registering for the VCRC Patient Registry is one of the easiest ways to inform researchers of our willingness to support research.  Registering takes two minutes.  The only information required is name, address, place of birth, date of diagnosis and gender.  Registering does not obligate you in any way.  It simply provides a means for researchers to inform you of upcoming research that you may be eligible for - and then you make a decision about whether or not to participate. You do not have to live close to a VCRC center to register, as upcoming studies may involve online projects in which anyone can participate.  So far, 379 CSS patients have registered for the patient registry!  Although this is an impressive number, we'd like to challenge 121 unregistered CSS patients to register by the end of this year so that we can proudly state that 500 Churg Strauss patients have demonstrated their support of this very important research initiative. Please register now!  

Read this article from the CSSA website to lean more about the Registry

Jane Dion wrote this article about participating in the CSS Longitudinal study

Patient advocacy groups are important members of the VCRC. Two CSSA Board members, Alicia Perkovich and Jane Dion, recently attended the VCRC Steering committee meeting in Boston. 

left to Right:
Jane Dion, Alicia Perkovich, Dr. Peter Merkel, Dr. Eric Hoyt (PAN Network) and Joyce Kullman (Vasculitis Foundation)