I get a fair number of emails asking about how someone can get “on” a clinical trial for MS. Instead of replying to each individually (which I have been doing), I thought I’d let you all know the path to learning more about this option in your MS journey.
It’s funny how there seems to be a very definitive line in the sand surrounding clinical trials: either you’d be very interested in being involved in one or you’d rather poke yourself in the eye. I am of the latter group, but really appreciate those of you who are in the former. Without those willing to take part in clinical trials, science would not advance. It really is that simple. And advancing we are. I can feel us closing in on the bastard and I’m pretty psyched about it!
Once you decide that you are, in fact, interested in participating – how do you find the studies to participate in? Well, my friends, you look right here. I’m going to plug you in to several studies that are currently recruiting – and – I’ll show you how to stay on top of any new announcements of future trials.
The mother of all MS research organizations (in my humble opinion) is NARCOMS (the North American Research Committee on Multiple Sclerosis). They’ve been around for 20+ years and have created a registry of over 36,000 people with MS to gather data on topics such as vertigo, disease progression, quality of life, mobility, genetics, overactive bladder and a lot more. This isn’t really a clinical study, per se, but it’s something I think we should all participate in so that they have a representative sample to gather data and find common ground in this disease. Spotting trends within a disease is paramount – particularly with one so completely unpredictable as multiple sclerosis. NARCOMS is in need of more participants – and it’s easy. Anyone who’s been diagnosed with MS can participate and contribute to research studies. You’re just asked to complete an enrollment questionnaire and update surveys twice a year. Those surveys take less than an hour to complete and can be done online or in print. Easy, right? Call them and get registered – we can all help each other on this one: 800-253-7884 or visit their website at www.narcoms.org.
Now – for the clinical studies – the actual drug tests, diet samplings and such, here’s a great resource: Participate in Clinical Trials. This brings you to a page on the National MS Society’s site where you can choose your state (sorry international readers, but check with your local MS Society), the type of MS you have (Relapsing-Remitting, Primary Progressive or Secondary Progressive) and any keywords you might be interested in to filter down to current studies available in your area. Also, check out MS Trials Alert. This page will keep you updated on the latest studies seeking participants. Everything from drug studies to physical therapy effectiveness studies to parasitic worm studies. No really. There’s one in there about a probiotic parasitic worm treatment. No kidding.
Other resources that might be of interest to you:
Additionally, I would suggest you set up a Google Alert with the keywords Multiple Sclerosis Research Recruitment and MS Clinical Studies Recruitment. It’s really easy to do. You can Google it to learn more or shoot me an email and I’ll walk you through it.
I hope this is helpful. It’s my goal to provide a place of community here, where we can share the triumphs, the bummers and the resources that will help us all. If you have other resources to share, please do so. I’ll make sure it’s available on the website.
Let me know how I’m doing. I always appreciate suggestions – what do you want to hear about next? And speaking of “hearing about” something – did you know that FUMSnow is starting a podcast?? Yep. We are. And we’re looking for suggestions on people to interview. Is there someone out there that you’d like some answers from? Doctors, nutritionists, researchers, homeopathic practitioners, insurance agents, disability attorneys, investment planners, etc.?? Let me know. I’ll do my best to get them on the show and ask the questions we’d all like answered.
Thanks for your continued support. Remember, it seems to help the stress, just to say F-U-M-S.
Special thanks to www.FreeDigitalPhotos.net for letting us use this cool microscope pic!!