Register with the Vasculitis Clinical Research Consortium

[JanW]

Search for it on google (it's a complicated address). Go to the section for patients.

All of top researchers belong to this. From throughout the world. Funding comes to the consortium and they do the work.

One very reason important to register, in addition to the fact that you can get the latest research information, is so that they can COUNT us. More of US means more money, means better therapies, means a better new normal.

I knew nothing about this. I'd be interested in knowing if you guys are all registered and I just missed the boat on this one!

[elephant]

Either did I JanW. I will check ( google ) it tonight. :)

[Sangye]

I missed the same boat.

Here's the link: http://rarediseasesnetwork.epi.usf.edu/vcrc/

[pberggren1]

I have heard of the VCRC but did not know that we had to register. Or maybe I did know and I just forgot. I tend to froget alot of things lately.

[JanW]

Thanks Sangye!

They just sent me the information on a longitudinal study of WG patients that includes Utah and Pittsburgh in addition to the established major centers (as well as Toronto for our Canadian buds). Maybe some of you who are close to those locations could participate.

The second study, which is looking at the use of arbicept (I hope that's right), specifically mentions the needs to reduce the use of pred for one reason to study this particular immunosuppressive therapy.

[pberggren1]

Yes, I do remember now. There is a short write up in the May/June VF newsletter about registering as a patient.

You can go online at The Vasculitis Clinical Research Consortium (http://RareDiseasesNetwork.org/vcrc)

[Lola]

I registered last winter, but never heard anything. Most likely because I am not near a center.

[JanW]

Probably not, Lola. There are only two new studies going on, and patients get themselves to the centers themselves -- they don't make any judgment about the patients based on how far away they are. The studies are on the site and you can contact the centers directly if you are interested in being contacted to be evaluated for a study.

[Aunnie]

I am in both studies,the VCRC and the Orencia(abacephtet sp also). The VCRC is only blood work every 3 months and Orencia is infusions monthly. I go to Boston Univ. Med Center. I live in Rhode Island.

Aunnie

[Lightwarrior]

I missed this boat also. I just followed the link Sangye provided us and registered...Thanks Jan

[Sangye]

If you're being treated by a Wegs specialist, they will automatically ask you about participating in studies if you qualify. Whenever I'm at JHU I see all the flyers listing studies but when I ask Dr Seo about being in a study he's 20 steps ahead of me, of course and has already ruled me out.

[onatreetop]

Ditto! Did it.I must be swimming after the boat as usual. Thank you for the info.