VCRC Patient Registry

Numbers Count! Register for the VCRC Patient Registry!

About the VCRC

The Vasculitis Clinical Research Consortium (VCRC) is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis and improving the care of patients with vasculitis. The VCRC is part of the Rare Disease Clinical Research Center Network, a network of clinical centers, each involved in research of specific rare disorders. This network is funded by the National Institutes of Health. The CSSA is proud to be part of such an important initiative.

From the VCRC website:

Goals of the Vasculitis Clinical Research Consortium:

• Enroll a large group of patients with vasculitis into an observational cohort study (where subjects are followed over time and clinical, laboratory and radiological data as well as blood samples specifically for research are collected at regular intervals).
• Conduct clinical trials of promising new drugs for the treatment of vasculitis.
• Establish a patient contact registry.
• Discover new laboratory markers of disease that will lead to better treatment and deeper scientific understanding of the causes of these diseases.
• Develop improved methods for studying vasculitis.
• Work with vasculitis patient support groups to help those patients who wish to be involved in research connect with those doctors conducting the research.
• Help other scientists do more research on vasculitis by providing specimens and clinical data from the VCRC for analysis.
• Train new young investigators in the field of vasculitis.
• Construct and maintain an electronic website resource with significant information for clinicians, researchers, and patients.

The operations of the VCRC are directed from the University of Pennsylvania with participating centers around the United States and Canada. In addition, the VCRC conducts online surveys on issues of critical importance to patients. The VCRC maintains the only international contact registry of patients with vasculitis.   One of the most exciting and important initiatives of the VCRC has been to establish a CSS Patient Registry. Patient registries, especially for patients with very rare diseases, provide invaluable  Information for researchers and may even provide incentive for research initiatives. 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.

The CSS Patient Registry has allowed patients to join a computerized database that is 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, including        the VCRC CSS Longitudinal Clinical Research Study.
• Successful CSS Patient Registry numbers 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 Churg-Strauss Syndrome Association encourages all patients with Churg-Strauss Syndrome to register for the free Patient Registry at the Vasculitis Clinical Research Consortium. The registry form is very short and takes two minutes to complete either online or by mail. The registry is open to patients from around the world. Registering for the Patient Registry simply allows the VCRC to contact patients about clinical trials. There is absolutely no obligation to participate, although participating in a trial can be quite satisfying. There are potential new CSS studies being discussed and quite possibly a large committed patient population could have an effect on generating more interest in studying this disease.

As of March, 2013, 602 CSS patients have enrolled in the Patient Registry! Some 166 patients are enrolled in the Longitudinal Protocol for Churg-Strauss Syndrome. The VCRC hopes to ultimately enroll 250 patients. Many enrollees have participated in the VCRC Genetic Repository One-Time DNA Study and many more have completed online questionnaires.

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 some studies involve online projects in which anyone can participate.

Participating Clinical Centers

It is not necessary to live close to participating Center as some of the projects involve online questionnaires.