http://www.arthritis-research.org/
I know many of us already participate in their 2 yearly surveys..but for everyone else...This is your opportunity to help research. The NDB is a 25 year old research databank with over 10,000 participants. It is the largest collection of statistics for rheumatology. Researchers all over the world use the information gathered. For example right now they are working on a project to help the ACR standardize the definition of "remission in RA". Each year dozens of information will be produced from the NDB and associated researchers.
It is free. They do not sell your personal information. It is simly filling out a survey (by hand or by computer) every 6 months. They are gathering information all rheumatic diseases. Do your part..its painless
buckeye, thanks again for posting this study. I went and signed up immediately last time you posted it, and it's probably about time for my second one because when I tried to put in 2007 diagnoses and it was like July or August, 2007 wasn't an option. I sent a nastygram to the site owner that they had a rather larger problem with their testing and would have problems being taken seriously, and got a terrific reply, and I apologized, as I just am worn out and couldn't believe a scientific study couldn't let you enter information for the current year. I then got another note saying they had found the screen/question/answer and fixed it and we are cool now - asked me to let them know anything else I found because they were a little shocked it went so long and no one else had caught it - LOL. But I think it's a great opportunity to do something for the next person who contracts our disease. CMost interesting. I've bookmarked this site for investigation after I change Rheumys. Thanks for the info.
K.
I too signed up for it last time you mentioned it. It was a lot of work to fill out but worth it.I'm glad you all participate...It is a worthwhile thing and painless
Cathy-I've always found the staff always accomadating so I'm happy to hear they were alble to solve the problem
Mary-the first survey always takes the longest. It will remember things like medications for subsequent surveys
Katalina-even though they ask for your rheumatologists name if you currently don't have one put down your PCP and explain in the remarks section on the last page