What Do Volunteers for Research Studies Do?
If you’re interested in participating in a research study for your condition, you may wonder what it’s like to take part. Research studies all have different goals and timelines, but follow the same basic structure.
The screening process
You’ve found a trial you’re interested in by searching on ClinicalTrials.gov or through Antidote, and you’ve contacted the researcher associated with the trial. First, someone from the study site will call you and ask a few questions to see if you may qualify. If the study site thinks you may be a fit, you’ll be invited in for additional tests and screening questions at the site.
Signing an Informed Consent
This is one of the most important parts of joining a clinical trial. An informed consent form is a document that says that the researchers have made you aware of what to expect. Before you sign an informed consent form, be sure that you’ve asked any questions you have about the trial schedule, goals, your insurance coverage and anything else on your mind. We put together a list of questions to help guide your conversation at the study site.
Many people wonder, for example, whether they will be given a placebo. Before joining the trial, ask the team whether it’s a placebo-controlled trial or not. Many trials test a standard treatment against the experimental one, rather than using a placebo.
After you’ve signed the informed consent form, you’re ready to start the trial. Often, at your first trial appointment, you’ll receive a physical examination as well as scans, if you haven’t received any recently.
A clinical trial appointment is just like a doctor’s appointment, with extra attention. You’ll be given labs, a physical examination, asked questions, or given other tests. One perk of participating in a clinical trial is the specialized care you may receive. You’ll most likely get more attention than in a regular session from your doctor.
Depending on the length of the trial, each session may be days, weeks, or months apart. Before you join, ask if the trial offers compensation for travel expenses, child care, or other costs that may come up as a result of your participation.
Taking notes or tracking your symptoms
The goal of a research study is to evaluate a potential treatment for both effectiveness and safety. It’s especially important to share any side effects you’re experiencing with the study team during the trial. You may want to keep a notebook to take notes about how you’re feeling so you can share a detailed report with the study team.
To help the trial track your symptoms, you may be given a pen and paper questionnaire, asked to keep a diary, or requested to use a wearable device to track your symptoms.
Researchers also want to know how the treatment is affecting your quality of life. They may ask you if you’re more able to participate in your day-to-day activities. Keeping notes about how you feel each day can be particularly helpful for answering these kinds of questions, especially if your study site visits are a few weeks or months apart.
What if I want to leave the study early?
Participating in a clinical trial is always completely voluntary. You can choose to leave at any time, for any reason. For example, you may choose to leave if the treatment has side effects are particularly uncomfortable for you.
Sometimes, researchers end a clinical trial early if they’re not seeing the results they were hoping for. If the study does end early, your trial team will contact your regular health care provider and update them on your health to ensure you receive continuous care.
Following up after
Before you start the trial, ask the study team how you’ll be hearing about the study’s results. The results from many studies are published in peer reviewed journals after the results have been analyzed. You can also ask at the end of the trial and get contact information from the study team to follow up.
Ready to start looking for a clinical trial near you? Start searching for research studies in your area below.