12/19/11 After a successful first year of the Arthritis Internet Registry, dubbed AIR, investigators are kicking up enrollment efforts, aiming to make it the largest registry of people with arthritis. The registry creates a centralized bank of information, which promises not only to support research for treatments, but also eventually to connect people who have arthritis with each other.
“AIR is meant to create a community of patients unlike any that currently exists. We want to empower the patient through online information about their disease, social networking for patients with similar diseases, and computer tools – for example, iPhone apps – to help them communicate with their health care providers,” says Robert Plenge, MD, PhD, explaining the long-term vision for the project. “In doing so, AIR will enable cutting-edge research to understand fundamental mechanisms of disease.” Dr. Plenge is a rheumatologist and geneticist at Harvard University and one of the lead AIR researchers.
Developed by the Arthritis Foundation in conjunction with the National Data Bank for Rheumatic Diseases and Quest Diagnostics, the registry was launched in June 2010. Almost 1,000 people enrolled in the first year, according to the findings of a feasibility study presented at the 2011 scientific meeting of the American College of Rheumatology. The researchers hope to hit 3,000 by the end of 2012, with the eventual goal of 20,000.
Although rheumatoid arthritis, or RA, is the primary focus of the AIR project, people with all types of arthritis are encouraged enroll. “The more data we have the better,” says Kaleb Michaud, PhD, co-director of the National Data Bank for Rheumatic Diseases and director of the AIR effort. “While we have more researchers currently conducting studies with the RA patients, we do have a couple that are interested in [osteoarthritis], and are often limited by the numbers available. Once more are enrolled, more researchers will want to use the AIR.”
Compared with randomized controlled trials, which gather information based on homogenous groups of patients, patient registries are more inclusive. “Clinical trials have an inherent bias. The patient population enrolled in clinical trials meet strict criteria and represent only about 5 percent of all people with RA,” says Michaud.
I am my best advocate. If you have any form of arthritis educate yourself. Be your best advocate.
By participating in the surveys, I feel I am helping someone and researchers as well.
The Sjogrens causes dry mouth problems and i use Guaifenesin, it seems to help has anyone else found this?
I also have same areas of pain, to keep my OA from severe pain I have found heat is good. I wear socks at night and during day use cotton hose or stretches under my jeans or dress pants. for my back at night I use a heating pad and also morning hot showers when my knee pain also causes my muscles to hurt I ride my bike and that helps immediately....M.Ann
I also have severe OA that I COULDN'T work anymore...period!
I have been on permanent disability for almost 3 years (after 35 years of steady employment) and it's not easy.
I lost approx $9,000 of my income but I've tried to adjust.
Unfortunately, the pain never goes away. I've had 2 neck surgeries and still need to have hips and knees replaced.
Sometimes it does get very depressing but just know that you are not alone. Continuous pain from morning to night is sometimes unbearable to make it thru the day.
After that I had both ankles fused. I've had shoulder replacements and fingers too. In 2009, I had my r.hip done again and in 2010 I had my left hip redone. It's not the same as when I was in my 20's. My bones aren't as strong and getting back in shape isn't that easy, but I'm finally sarting to get better. I'm sorry this is so long, but what I'm trying to say is if u r in alot of pain & cannot function having the surgery is the best thing u can do for yourself. I do not know your story or circumstances, but I do know that it works and it is so worth it. I had my knees done back in 1987,1988 and I haven't had any complications. Just think what they can do now with all the new technology. I just wanted to tell you that having surgery isn't so bad. If u would like to talk more, u can email me @ dparkin21@msn.com. I hope this helped u out.
Am trying acupuncture, raisins and gin,and tiger balm. Any suggestions would be appreciated.
Quality of life has been crap. You wake up each morning in pain and stiff for hours, before you can get yourself going each and everyday.
I have neck, back, shoulder, elbows, knees, feet & severe hand pain. Had 3 fingers fused it helped, but I have 7 more in pain, plus wrist pain (had surgery on both) pain is back again from the wrists to the tips of my fingers.
How can we survive at work?? Cannot afford to go on disability. My doctors tell me I need to do it, I just took a year off of work, but it did not help anything. I go to the gym 3 days a week for 2 1/2 hours each session, I also do water exercises in our community pool. Been to therapy had numerous epidurals. Nothing helps. Any ideas ???
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