I was talking with one of the Asthma Research Recruiters over at the NIH in Bethesda Maryland where I’ll be involved in a study later this year( more about that in a future post), and I was shocked to learn that they were having a really hard time getting volunteers for there asthma research projects, especially those with severe asthma.
Here’s the deal… asthma isn’t gonna go away anytime soon on it’s own. If you suffer from this disease and you want to improve the odds of having better treatment options available to you during your lifetime, you should seriously consider becoming a clinical research volunteer for an asthma research study or clinical trial in your area ( or if you’re adventurous like me, out of the area).
To make it easier for you, I’ve listed 4 of my favorite clinical trials search engines to get you started.
3) Medpedia
4) Trial-X [You'll find a handy little search tool on my sidebar]
While searching for a study that interests you, ask yourself these questions:
* What is the purpose of the study?
* What is required of me?
* What is my role in the study — am I a healthy volunteer or a patient volunteer?
* Will the study directly benefit me?
* Will the study benefit others?
* Are there risks? If so, what are they and what are the chances that they will occur?
* What discomforts are involved?
* What is the total time involved?
* Are there other inconveniences?
* Have I discussed participation in the study with those who are important to me, such as family and friends?
* Do I wish to participate in this study?
We need to put and end to the suffering that this disease causes. There’s a lot of promising research going on right now, but they can’t go forward with without human test subjects. I know it’s hard to find the time required to get involved, but many of these studies will reimburse you for your efforts….some will even pay for your travel expenses. If you have moderate to severe asthma and can travel, you might also consider SARP at the University of Pittsburgh or one of the asthma studies conducted at the NIH.
Thanks for your help!
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Rock on my friend. Thanks for all you do, and all you do get people like me THINKING!
Looking forward to that post on the MD study!
NO..Ms Lovely, Thank YOU for what you do! Education and involvement are just as important and you score an A+ in that area.
Hmm… now we're back to that thanking each other thing again
.
On the other hand, we make a perfect team!
You are very lucky that there is so much research available for you to take part in. However, considering that you are travelling huge distances across a virtual continent, it would be the equivalent of my taking part in a study in somewhere like Poland!
I haven't asked my Team if there is anything I could participate in, but I know I was added to a National data base for severe/difficult asthmatics. I think a network of UK Drs in the top lung centres have access to it compare treatments etc.
Parexel http://www.drugtrial.co.uk/ have contacted me several times to take part in residential clinical trials for new asthma medications, held in London, per chance, but once they hear my drug list, level of disease etc, I am over their threshold for participation. There is clearly a case of being too sick to participate here. I really don't know if just learning even more about severe asthma and stubbornness would be worthwhile if I ever did take part!
You are so good to give yourself up to medical science like this. I can guess it takes a whole load out of you each time. Surely one day we will all benefit. Thank you.
Thx Sus, but Im no saint. The way I see it, I have a rare form of the disease, so why not share it if it will help others.
In the asthma research world there is severe and then there is verysevere. Like you, I fit into the latter category, and as such, dont qualify for most studies. (Mainly for liability reasons. They dont wanna take the risk). SARP is the exception of course, where sicker is better. SARP is more of a data collecting study than a clinical trial for new therapies, but I think it’s just as important because it gives us a face. I think its important for researchers to understand that there is more to asthma than just wheezing.
Thanks for doing your part.
It's too bad that SARP is just nigh on impossible for me right now-there's always a next year-hopefully. I can't travel to CA this Easter as my lungs are still not strong enough for flying even though the desert heat would help me. That bout I had before Christmas took more out of me than I'd realised. We took the opportunity to get our doggie now knowing we couldn't go away!
Funny, but I've never put myself in the very severe group-I certainly don't even look sick, except pale and scrawny right now with a cough that could wake the dead still-But I'm feeling like I'm having a bit of a purple patch, it would be good to be studied now and have a decent set of baselines-hope I haven't jinxed the old bronchospasm by saying that, LOL!
From what youve told me about your medical history, you meet all the criteria for the very severe category. Steroid dependent, Crappy PFTs, Refractory exacerbations, ect etc.
If you\’re ever in a position where youre able to do SARP, I can arrange it for you.
Im sure theyd love to get there hands on a nice specimen like you