If you or a loved one has a serious disease or condition, joining a clinical trial may help you get access to new treatments. It also lets you contribute to society by being part of scientific discovery that could help others.
But how do you join a clinical trial? You can’t just sign up. It’s a decision that should be made with your healthcare team. And, then, you have to qualify. It’s also important to think about the costs, timing, travel and how being in the trial will work with your ongoing care.
These questions may feel overwhelming — but figuring them out could save your life.
Here’s what you should know about getting into a clinical trial.
Why join a clinical trial?
When you join a clinical trial, you may be able to get access to new drugs or treatments that you might not otherwise receive. You will also be a part of the research that goes into developing new treatments that could help other people.
"If you have a tough-to-treat cancer that is historically not responsive to standard of care, participating in a trial could increase your chances of getting access to innovative therapy before it becomes available on the market," said Dana Hutson, a board-certified patient advocate and founder of Cancer Champions, a medical advocacy firm that helps patients and families navigate cancer. "Sometimes, access to the most promising and innovative treatments for hard-to-treat cancers can only be accessed through a clinical trial."
In a 2023 HealthyWomen survey, 54% of women surveyed said they would consider joining a clinical trial if there were potential benefits.
In addition to the benefits, there can also be downsides. First, there's no guarantee that the new treatment will work for you. And the new treatment could cause side effects. You also may not get the new treatment in the trial. In a clinical trial, some people get the experimental treatment while others don't, so scientists can see how old and new treatments compare. But, according to Hutson, you'll get at least the standard of care if you have cancer.
"You will not be treated like a guinea pig," she said. "Technology has come such a long way that scientists and clinicians know so much about a new therapy before it even enters into the clinical trial setting, even if it is a 'first-in-human' trial."
How to find a clinical trial
To find a study for your condition, you can search publicly and privately funded clinical trials at ClinicalTrials.gov . You can also check with disease-specific advocacy or patient groups.
According to Hutson, the clinical trial landscape is always changing. "There are trials opening and closing all the time," she said.
Searching on your own might be overwhelming. Each study has specific rules for who can participate, which may be hard to figure out.
"There are usually strict criteria for acceptance into a trial," Hutson said. "If you embark on your own search, it is important to understand, at a minimum, what kind of cancer you have (cell type) — not just 'breast cancer': where it is in your body, the number and kind of prior therapies you have had, the genomic profile of the tumor, and your overall health — before beginning your search."
Several companies help match patients with trials, including some that use AI to do so . The services are usually free for patients, although you'll probably have to consent to sharing your medical records.
It's important to discuss clinical trials as an option with your healthcare team. Your healthcare provider (HCP) might know of relevant trials or help you find one. Other HCPs who specialize in your condition might be good sources of information about specific trials for you. (Those specialists might even be conducting the research themselves.)
The HealthyWomen survey showed that almost 3 out of 4 women would want to learn about clinical trials from their HCP. And nearly half (46%) of survey respondents said they'd consider participating in research if their HCP recommended it.
But not every HCP knows about available trials for your condition.
"Your physician may not bring up participation in a clinical trial," Hutson said. "If it is something you would like to know more about, you may have to ask. And even if they tell you they don't have anything for you, that does not mean there is not a trial out there that may be perfect for your situation. You often have to be proactive and do the research yourself."
Questions to ask before signing up for a clinical trial
Before signing up for a clinical trial, it's important to understand what you're getting into. Study organizers must get your informed consent. That means they have to share specific details with you about the purpose of the research, how the trial will work, the patient's role, potential risks and the patients' financial responsibility — all before you agree to participate.
"These [informed consent] documents are often long, and it is advisable for the patient to take them home and discuss [them] with their family, friends or an advocate prior to signing," Hutson said.
Hutson suggests several questions to consider, including:
- Has the drug been studied before?
- Is there any published information about the drug being studied?
- How many other patients are in or have been in the trial? What have their experiences been?
- Is the study drug paid for by the research sponsor or will insurance cover it?
- What other financial obligations are there for participants?
- What are the risks of participating in the trial?
- What benefits or outcomes could participants expect?
- Are there at-home options or do participants have to travel?
The bottom line, according to Hutson: "Ask questions about anything you do not understand."
Your HCP's role
Although you may be able to participate in a clinical trial from home, most involve some centralized testing or treatment at a study site, or a combination of at-home and on-site procedures.
Ideally, your HCP(s) and the trial organizers will coordinate your care. Hutson suggests setting up a call between your HCP(s) and the study coordinator when you first sign up and as needed to make sure everyone involved in your care knows what’s going on. If you’re comfortable communicating electronically, you can use your patient portal to communicate updates with your HCP. You also may be able to link your patient portal to the trial site’s portal.
Ultimately, if all the legwork involved in getting into a clinical trial is too overwhelming, you can contact a care coordinator or patient navigator service through your insurance company (if they offer one) or hire a private patient advocate. These professionals can help with all of the stages involved in finding, navigating and participating in a clinical trial, including facilitating and coordinating communication between HCPs.
This resource was created with support from Pfizer, a HealthyWomen Corporate Advisory Council member.
