Saturday, September 4, 2010

Please register at the VCRC's new Behcet's Disease database

I just received the following info from Cindy Foster, who runs There's a new research database that's open for registration by all US and Canadian BD patients, as well as BDers in any other countries. It's run by the Vasculitis Clinical Research Consortium, as part of the Rare Diseases Clinical Research Network. It received funding from the NIH. The registration process only takes about 2 minutes, and doesn't require any info from your medical records or doctors. Please read the information from Cindy (below) and then sign up! (Even though it says that only certain NON-BD patients are eligible to register right now, if you click on "Behcet's Disease," you'll be taken to the registration form.)

Thanks so much, Cindy, for your work on getting Behcet's included in the database!

From Cindy:

I have some good news for us all. Over the last two years I have been working with the VCRC (Vasculitis Consortium Research Center) to add Behcet's Disease to their database. Well I would like you to all know that this has now officially happened.

What this means to the Behcet's community....
- We can now register our names to be informed and included in any new research projects.
- Researchers don't want to take on rare diseases because it is too hard to find participants.
- With many BD patients on the data base, a researcher can then apply for more funding because he has a base of people to start off the study.
- Government funding is also more readily available
- Support groups can then help fund some of these studies.

It is SO very important that you register. It is just a short form which will take about 3 minutes to fill out. It does not hold you to participate in any study unless you wish to.

PLEASE take a few moments right now and join the registry. Let them know that Behcet's is not as rare as they think. With all of us registered, they will be able to see what a large group we have. Also send this to any others who have Behcet's Disease. It is not country-specific.


Here is more information, from the VCRC:

There are several ways that you can take action with the VCRC. You may join our contact registry, participate in clinical trials, or participate with associated patient advocacy groups. More information about each is featured in this section.

What is the Contact Registry?

The VCRC Contact Registry is a method by which patients with vasculitis can register themselves with the VCRC in order to be contacted in the future about clinical research opportunities and updates on the progress of the VCRC research projects. The contact registry is anonymous and free of charge.

You (or your child) are invited to participate in a research project that will develop a nation-wide registry for patients. This project 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 reason we would like to create the contact registry is to inform patients and/or parents of patients in the contact registry of clinical research studies performed in our new multi-center Vasculitis Clinical Research Consortium. The Vasculitis Clinical Research Consortium has been established to collect information and perform research on vasculitic disorders including Behcet's Disease, Takayasu’s Arteritis, Giant Cell Arteritis, Polyarteritis Nodosa, Wegener’s Granulomatosis, Microscopic Polyangiitis, and the Churg Strauss Syndrome. Joining the contact registry will help researchers identify and recruit patients who are eligible for participation in future research studies.

Information contained within this registry will be used for recruitment to research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers seek to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients.

Patients who participate in research make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.

Who Can Join the Contact Registry?

We encourage patients from all 50 states in the United States and every country to join the VCRC Contact Registry. Any patient with a confirmed or suspected diagnosis of a vasculitis disorder (such as Behcet's Disease, Giant Cell Arteritis, Takayasu’s Arteritis, Wegener’s Granulomatosis, Microscopic Polyangiitis, Churg Strauss Syndrome, or Polyarterteritis Nodosa) can register.

How does the Contact Registry Work?

After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.

Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.

Click here to join the Contact Registry!