NIH
Funds Vasculitis Clinical Research Consortium
VCRC Creates a Patient Registry
The National Institutes of Health (NIH) has awarded a $6 million,
five-year grant for the establishment of the Vasculitis Clinical
Research Consortium (VCRC). The multi center VCRC fosters
and facilitates clinical investigation in the inflammatory
vasculitides, including Churg Strauss Syndrome. Dr. Peter
Merkel, who is on the CSSA Medical Advisory Board, serves
as Director and Principal Investigator for the VCRC. Boston
University serves as the lead medical center.
The VCRC consists of four major U.S. vasculitis centers:
Boston University, Cleveland Clinic, Johns Hopkins, and Mayo
Clinic. The centers combine their clinical and research expertise
with the resources of the General Clinical Research Centers
at each site to form the core of the Network. Additionally,
the combined strengths of several domestic and foreign secondary
centers have been incorporated into the Network. The VCRC
serves as a focal point for vasculitis research in the United
States and internationally for both clinical investigators
and patients.
Activities include:
| Developing a clinical data repository in collaboration with other Rare Disease Clinical Research Networks and the Rare Disease Data and Technology Coordinating Center. | |
| Building a vasculitis clinical specimen bank for storage of serum, plasma, cells, DNA and tissue samples linked to the clinical data repository. | |
| Enacting a national recruitment program in cooperation with various vasculitis patient advocacy groups. | |
| Utilizing the extensive resources of the General Clinical Research Centers at each Primary Network Site. | |
| Conducting a series of related longitudinal studies of novel biomarkers of vasculitis disease activity. | |
| Utilizing the VCRC and patient base to conduct Phase I and II clinical trials and creating the infrastructure to greatly facilitate the design and performance of other future trials. | |
| Establishing a Vasculitis Clinical Investigator Fellowship to provide a mechanism to support, train, and mentor fellows interested in establishing academic careers focused on vasculitis research. This aim will address the pressing need in academic medicine for the training and retaining of patient-oriented clinical investigators. | |
| Building and contributing to an electronic web site resource with substantive content for clinicians, researchers, and patients. |
The VCRC provides a critical and far-reaching infrastructure
for clinical research in all the inflammatory vasculitides
where multiple international investigators, patients, pharmaceutical
companies and others partner with the Consortium to conduct
research ranging from basic laboratory studies of the cause
and pathophysiology of vasculitis to clinical epidemiology
to advances in clinical trial design to conduct of multiple
clinical trials of new therapies.
Because patients affected with vasculitis are spread throughout the country, research of the vasculitic diseases requires the collaboration of scientists and doctors and the ability to share resources and patient populations. The Churg Strauss Syndrome Association views this new Consortium as an exciting resource for research into vasculitis and hopes that through it we will gain a better understanding of Churg Strauss Syndrome.
VCRC Patient Registry
The CSSA views the creation of a registry for patients with Churg Strauss Syndrome to be of the utmost importance in facilitating research into our disease. The CSSA urges all CSS patients to register and has provided a direct link to the VCRC patient registry. Here are some things you might want to know about the registry:
| Registering is completely anonymous. | |
| Your rights and privacy are strictly guarded. | |
| You can always drop out of the registry. | |
| There is no charge to patients and the Registry is not for profit. |
These are the reasons registering is so important:
| Our disease is very rare and it is difficult for researchers to find subjects for clinical trials. A patient registry will create a pool of CSS patients “ready to go”, making research easier. | |
| Numbers count. If a lot of CSS patients join the registry, it might become apparent that more people are afflicted with CSS than was previously known. Knowing just how many CSS patients there are might help CSS achieve greater recognition and importance in the research world. | |
| You will have a greater chance to participate in clinical trials. | |
| We will feel empowered as individuals and as a group, knowing that we are doing something that advances an understanding of our disease. |
Other medical institutions and research facilities might have
their own patient registries. You can find more information
about them either in the Focus
on Research articles or by following the links in the
Helpful Links or Research
Articles sections of this website.
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