All it takes is a little time every Jan and Jul.
the National Data Bank of Rheumatic Diseases run by Dr Fred Wolfe of Wichita Kansas is the largest databank of stats for people with rheumatoligical diseases around. They have over 10 thousand participants. They track everything from disease progressions, financial impact, medications, surgeries, etc. They publish dozens of papers yearly and their stats are used by researchers throughout the world.
Your information is safe. I've participated for over 20 years...since I was diagnosed by Dr Wolfe.
Its from this database that much long term effects of the biologics will come from
APers you especially should participate its from data such as collected here that will help "mainstream" antibiotic use.
And, once again, I want to thank Buckeye for always posting twice a year about this, as I joined the first time I read her post. I just finished my third round, so that's 18 months now.
It's interesting too, as it makes your reflect over your past and your current health status.
Thanks, buckeye. And thanks to everyone who posts anything that might be relevant and helpful like Waddie, The Sleepless :) mentioned in his thanks on another thread. We need to pull together for our common good if we are going to achieve any ounce of success in managing our disease on a daily basis. Cathy PS I predict 8 posts slamming me for that last sentence. Thanks Buckeye.
I will check this out. I am newly Dx, so there wouldn't be much information on me to gather just yet.
Tink
Thanks, Buckeye, great idea.
Pip
sTinkerbell
as a mewcomer you are a perfect subject for this study. They will have your journey with RA from beginning to end. Its important to gather information on the newly diagnosed
Ive been doing this for a year now. or 18 mos I forget.
what I see is no change either way..
buckeye-
It's located in Wichita. Does the site have any of the articles it has published? I couldn't find them.
I do a study twice a year already.. IDK if it is the same one... I'll check on that..
thanks, buckeye.
Jan
this page is a list of just the papers presented to the ACR throught 2007
and there 37,300 hits on google scholar
he was a practicing rheumatologist until he retired from his practice to concentrate full time on the NDB
here's a link to his curriculem vitae
buckeye2009-01-16 15:14:29buckeye-
Thanks for the sites.
What was his bias as a practicing rheumatologist? What treatments did he use? MTX, biologics? How did he treat you?
Lets see this was about 24 years ago and the treatment protocal was starting with asprin lots and lots of asprin. We added plaquinil and then when MTX was approved for RA we added 7.5 mg of that. The asprin was replaced with motrin The biologics weren't even in human study yet. The treatment protocal wa to start slow and build up. I guess he was a bit ahead of his time because he added the mtx to the plaquenil instead of replacing it which was far more common then. MTX was still a name brand then and cost over .00 per pill.
he was a good dr...he had his own lab so we get test results as he saw you
Thanks for the link. I just registered, so will get in on the next survey in the summer. Very easy to register and took less than 10 minutes.
Be sure to read all the research articles, they post a new one twice a year and they are always interesting.
This group caught the Vioxx problem by discovering heart attacks and people on vioxx. I've done it for years and you are right about getting you to reflect.I will sign up when I have time!!!!
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