Tags

, ,


I must have checked a box somewhere, sometime otherwise I wouldn’t have gotten the letter. You know those letters that start out “You previously contacted us and requested information …” This one is from Bristol-Myers Squibb (BMS) and even though I usually toss this kind of letter directly into File 13 (aka, the wastebasket), this one has piqued my curiosity.

BMS is introducing a data collection research projected called RALLY. It’s a long-term study evaluating the impact of RA on the quality of life and treatment experiences of people with RA and rheumatic conditions. There’s not much effort. About twice a year fill out a questionnaire that takes 30 to 60 minutes. Their recruitment goal is 20,000 participants.

On one hand, this is the kind of thing that I support because I believe that knowledge is power and the more we understand about RA, the closer we come to finding better treatments and, eventually, a cure. On the other hand, there is a certain qualm about providing so much information that goes into a database. (This comment from me — the woman who has given her fingerprints and retinal scans to the NSA to get through airport security and immigration more quickly …. ) I haven’t looked at the questionnaire yet but, among other things, the letter says they might contact my doctor to verify my diagnosis. I get it, they want valid information.

If you would like to learn more and/or participate there are two websites. For frequently asked questions, go to http://www.arthritis-research.org/participate/frequently-asked-questions. If you want to participate, you can either call 1-800-323-5871 or visit the RALLY website at www.ndbrally.org and click on “NDB & RAlly Participant’s Entry.”285x285_Best_RA_Blogs_2014_1_0

In other news, I’m proud (and somewhat humbled — again) to have been notified that Carla’s Corner has been named one of Healthline’s best Rheumatoid Arthritis blogs. Many of my favorite bloggers have also made the list. Check them out at http://www.healthline.com/health-slideshow/best-rheumatoid-arthritis-blogs. If you aren’t already familiar with the terrific people who write these blogs and share their stories, I think you’ll find it well worth your time and effort. There are some extraordinarily inspiring and educational posts out there.

This week is filled with doctor’s visits. I should have lots to report by the end of the week (hopefully all good!). Thanks for checking in.

 

 

About these ads