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What are the possible risks of participating in clinical research?
Clinical research is designed to be as safe as possible, but there is still some risk. It’s important to understand the possible risks of any ALS clinical research you consider participating in.
A few possible risks of clinical research are listed below. Take a look and mark the risks that matter most to you.
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All investigational products (like study drugs) being tested in a clinical trial or offered through an expanded access (EA) program are experimental. That means researchers may not know how the investigational product could affect you.
You could have side effects, or your ALS could progress. The research team will monitor your health during the study. If you have serious side effects, they may recommend that you stop using the investigational product. You can also decide to stop participating in the study at any time.
Not all investigational products studied in clinical trials or offered through EA programs will improve your symptoms or slow your ALS progression — even if they seemed promising in earlier studies.
Keep in mind that some types of clinical trials test both a study drug and a placebo. A placebo looks just like the real study drug but doesn’t have any effect on your health.
If you’re participating in a clinical trial and are concerned that it’s not positively affecting your ALS or even making your symptoms worse, you can work with the research team to make the best plan forward for you. You may choose to stop participating in the study — that’s one of your rights as a participant.
All clinical research involves sharing sensitive and personal information — like medical records or test results. But researchers are specially trained to use and store sensitive information carefully and to protect participants’ privacy. The research team will explain exactly how they’ll use and protect your information before you join the study, when you review the informed consent form. If you have any concerns, you have the right to ask the research team questions — and you can decide not to participate or to stop participating at any time.
