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What is participating in clinical research like?
Every clinical research study is different, but here’s some general information about what you can expect.
Share your interest in clinical research with your medical providers — and let them know if you decide to participate. They can discuss how clinical research might align with your goals for your health or your legacy — and answer some of your questions about participating.
And if you do end up participating in a clinical trial or expanded access (EA) program, it’s important to tell your providers about any investigational product (like a study drug) that you might use as part of the study. That will help them provide the best clinical care for you while you participate.
The research team will work with you to find out if you meet the eligibility criteria, which define who can participate. This will include discussing your medical history and a list of medicines and supplements you take. They will also ask you to share medical records or come to their medical center for an in-person evaluation.
If you’re eligible, the research team will share an informed consent form that describes what will happen during the study and your rights as a participant. You have a right to get all the facts about the study so that you can make an informed decision about whether to participate. And if you do choose to join the study, you have a right to stop participating at any time.
When you talk to the research team, it’s important to advocate for yourself. Don’t hesitate to ask questions about the study — asking questions can help you understand what to expect and make sure the study is a good fit for you. For example, you may want to ask about:
- The study’s risks, benefits, and costs to you
- How the research team will use your medical information
- How and when you’ll see the results of the study
- The results of earlier related studies
While you’re participating in a study, you’ll be expected to follow the research team’s instructions. Before you join, you’ll go over an informed consent form with the research team. This form will clearly explain exactly what will happen during the study. Depending on the study, this may include:
- Taking a study drug, following a special diet, or using a medical device as instructed
- Going to regular appointments at a medical center or on your computer, tablet, or smartphone
- Performing certain activities on a smartphone or tablet
- Answering questions about your health
- Having medical tests, like blood draws or lumbar punctures
The study will end once the last person who joined the study has finished participating — once they’ve gone to their last study appointment or had their last test. Then the research team will start analyzing the information they collected. This can take a long time — months or years — especially for studies that had a lot of participants or covered a long time period.
During this time, if the study was a clinical trial, participants may be offered a chance to continue using the investigational product through a program called Active Treatment Extension (ATE) or Open Label Extension (OLE).
Many people living with ALS find that participating in clinical research can be an empowering experience. But it’s important to carefully think through why clinical research is meaningful for you and what type of study might be right for you and your loved ones.
