Don’t you just love it when you get a sneak peek at something great? Or perhaps learn a wonderful secret before anyone else? I’m feeling that way now after spending some time with Joe Coe and Dr. Ben Nowell of Creaky Joints.
It’s no secret that I’m a fan of Creaky Joints and all the advocacy they do for people with rheumatoid diseases and I feel privileged to be associated with their Joint Decisions team. But I am really, really excited about Arthritis Power, their new arthritis research initiative. Okay, let’s face it. I’m in favor of research into RA because the more knowledge there is, the better chance we have of finding a cure. But not all research projects are created equal. I love this one not only because Creaky Joints is involved, but because the patients who participate in the research get so much back! And yes, the Creaky Joints team has partnered with the outstanding folks at the University of Alabama in Birmingham, so there are some top-notch people behind the initiative as well. But did I mention how great it is for the participants? (Oh, right, I did, but it bears mentioning again.)
The research is done either through your computer (at the moment) or mainly (coming in May!) an app on your SmartPhone. It tracks five key areas: Pain interference, physical function, sleep disturbance, fatigue and the RAPID3 general health assessment. But not only do they gather this information for their research, you get reports back that let you track this data over time, either for your own use or for sharing with your care team. In addition, you can enter your current drugs/treatments and those are tied in. I love it. It’s not research that sits on a shelf somewhere, it collects information that you can actually use.
One of the things that I love about it is how accessible it is for everyone. Even though the survey is highly scientific, it’s written in very clear language and is easy to enter and navigate (a few clicks of the mouse on the computer).
Obviously, the more participants there are, the better the research, so I’m giving you a heads up that YOU NEED TO SIGN UP FOR THIS. (Sorry, was I yelling? Let me just say that again: YOU NEED TO SIGN UP FOR THIS.)
The one catch? It’s not quite ready for prime time yet. I was given a sneak peek in to the “early access” site that still has some “quirks” and the real launch will happen in May when the smart phone is launched. But if you want to go look now, the link is https://www.creakyjoints.org/arthritis-power/#share.
Be aware that you will be asked to read/sign some consent forms because this isn’t just an ordinary website, this really is serious research so Creaky Joints needs to be sure things are legal. If you’re already a Creaky Joints member, it’s a bit quicker because you can just link to your existing profile. And if you’re not already a Creaky Joints member, you should take a look around the site and see what you’re missing.
At any rate, I hope you’re excited about this research initiative as I am. (And if you’re not, you should be!)
Thanks for checking in.