The VCRC Churg Strauss Syndrome Patient Registry Initiative with the NIH
The Churg Strauss Syndrome Association is thrilled to announce the long anticipated initiation of the CSS Patient Registry through the Vasculitis Clinical Research Consortium (VCRC). The CSS Patient Registry is a collaborative effort among the VCRC Investigators, the National Institutes of Health (NIH), and the CSSA. Details of the VCRC can be found on the VCRC website. Details of the Patient Registry are also available by clicking on the VCRC Patient Registry on the left hand side of this page or by following this link.
The CSS Patient Registry will allow patients to join a computerized database that can later be used to inform and recruit potential subjects for clinical research studies. Although the computer will “know” who you are, the investigators will not until you take additional steps to identify yourself. Thus, your privacy is protected while the VCRC will be able to document how many patients are available for different research studies. The resources and infrastructure to develop a comprehensive registry has long been a goal of the CSS community and the VCRC Patient Registry meets that need.
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. Specifically, the VCRC CSS Longitudinal Clinical Research Study is expected to be launched within 2005 and will allow any patient with CSS to participate in research.
*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.
Dr. Peter A. Merkel of Boston University and the Principal Investigator of the VCRC
says: “The VCRC CSS Patient Registry is an exciting opportunity for patients and clinical researchers to get together and help ensure the success of future clinical research projects in this disease. We believe that only with direct partnership with patient groups can we be successful in this type of rare disease research.” The CSSA has played an important role in the development of the VCRC website and the VCRC CSS Patient Registry. We can all be proud of the partnership we have established with these leading vasculitis investigators.
The CSSA encourages its members to consider joining the VCRC CSS Patient Registry. The simplest way to do that is to click on this following link and follow the instructions. If you have any problems, please contact Ann Corbo at email@example.com Jane Dion at firstname.lastname@example.org.