If you have IBD, what’s the most significant thing you can do to help others fight the disease? For most people, the answer is: ‘volunteer for a clinical trial’.
Clinical trials are where medical science meets actual patients like you and me. You probably know that clinical trials are used to test drugs that might help treat inflammatory bowel disease, but clinical trials are also important in helping understand other aspects of the disease — emotional, physical, psychological, and so on. Some trials only require you to fill out a survey.
The best place to find out about clinical trials (at least in the U.S.) is ClinicalTrials.gov — a registry of active and closed clinical trials. As of this writing, there are more than four hundred clinical trials currently recruiting patients with IBD all over the world. That’s a ton of things we don’t know about the disease, that you could help scientists figure out.
For example, here’s a study in France looking for patients to help test the French version of the IBD questionnaire. Here’s a study in the US looking for patients to test a new app for tracking symptoms. Here’s a study looking at fecal microbiota transplant, or the ‘poop transplant’.
Here’s one in Britain that looks at the information patients get about the disease and whether that contributes to anxiety. Key quote: “The quality of information found on the internet varies widely and up to 50% of websites have been judged as poor.” [Ahem.]
Of course, if you want to take mystery drugs, there are tons of those, too. Those studies are called ‘interventional’ — where ‘intervention’ can mean a medication, a vitamin, a procedure, or a behavioral therapy. The surveys-only kind of trial is called ‘observational’, because mostly they just… observe. Clinicaltrials.gov lets you filter out results based on these and other criteria, to find a trial you are comfortable joining — and the site will even help you find trials close to your home.
If you find a study that looks interesting, skip down to the ‘detailed description’ — which is usually easier to understand (the rest of the entry is more for researchers). Read through that, and then right below should be eligibility criteria for the trial. If you are eligible, there is contact information below that to help you connect with the researchers.
If you are thinking about doing a drug trial and worry about getting a placebo, keep in mind that your chances of getting the placebo are usually not 50/50. That’s a common misconception. Depending on the study, it could be a lot lower — meaning you are a lot more likely to get the actual drug than not. And whether or not you get the drug, you can always drop out if the trial isn’t working for you. Granted, the researchers would rather you stay in, but it’s your body.
I’ve done 4 clinical trials: in one I was definitely in the placebo group, in two I got the medicine, and in one I never found out. I spent a lot of time in a research hospital letting doctors use me as a guinea pig to test possible treatments. And while we never found a cure, I am glad that I did my part to move knowledge of the disease forward. So will you help?
Photo ‘The Gift Of Life’ by Flickr user TaylorHerring used and modified under Creative Commons license.