Longitudinal Studies Launched

Churg Strauss Syndrome Longitudinal study

The Vasculitis Clinical Research Consortium (VCRC) is now actively enrolling patients in longitudinal protocols aimed at increasing knowledge of vasculitic diseases. Churg Strauss patients as well as patients with Giant Cell Arteritis, Takayasu's Arteritis, Polyarteritis Nodosa, Wegener's Granulomatosis, and Microscopic Polyangiitis are eligible to participate in this study. Specific information about the study can be found in an informational flyer prepared by the VCRC which can be accessed either at the end of this article, or by downloading it.

Registering for the VCRC Contact Registry is the first step to take to participate in this important research. There are now three ways to register: online at the VCRC website, toll free by telephone at 866-313-9879 or by sending in a registration form through the regular postal service.

The CSSA views the VCRC registry for patients with Churg Strauss Syndrome to be of the utmost importance in facilitating research into CSS. The CSSA urges all CSS patients to register and has provided a direct, permanent link to the VCRC on our website. All patients are urged to register even if they don’t live close to one of the four centers as additional medical institutions from around the world may eventually partner with the VCRC to perform studies.

The Registry is of major importance to patients with CSS for several reasons:

• Registering provides a mechanism for the VCRC to directly update you regarding research advances and ongoing clinical trials.
• The Registry provides a mechanism to recruit patients for specific CSS related research studies that are anticipated to be performed over the next several years through the VCRC, including the VCRC CSS Longitudinal Clinical Research Study.
• Given that CSS is a rare disease, the more patients that register with the VCRC CSS Patient Registry, the greater the ability of the VCRC Investigators to document that there are sufficient numbers of patients available to realistically conduct clinical trials in CSS. Such demonstration of feasibility is extremely important to research sponsors such as pharmaceutical companies and the NIH.
• Successful CSS Patient Registry will demonstrate the interest in clinical research by the CSS community.
• Registering for and participating in trials is empowering as it provides a mechanism for patients to take an active step toward advancing an understanding of their disease.

The CSSA is proud to report that 150 CSS patients have already registered with the VCRC! It’s a great start, but let’s improve those numbers to show researchers we’re committed to helping advance research into our disease.

A first hand report from a patient enrolled in the VCRC CSS Longitudinal Study