If you or a loved one has a serious illness or condition, join a clinical trial can help you get access to new treatments. It also allows you to contribute to society by being part of a scientific discovery that could help others.
But how can you participate in a clinical trial? You can’t just sign up. It is a decision that should be made with your healthcare team. And then you have to qualify. It is also important to think about costs, time, travel, and how participating in the trial will fit in with your ongoing medical care.
These questions can be overwhelming, but solving them could save your life.
Here’s what you should know before participating in a clinical trial.
Why join a clinical trial?
When you join a clinical trial, you may be able to get access to new medications or treatments that you would not otherwise receive. You will also be part of research aimed at developing new treatments that could help other people.
“If you have a difficult-to-treat cancer that historically does not respond to standard care, participating in a trial could increase your chances of gaining access to an innovative therapy before it is available on the market,” said Dana Hutson, a member of the board. -certified patient advocate and founder of Cancer Champions, a medical advocacy firm that helps patients and families cope with cancer. “Sometimes, access to the most promising and innovative treatments for difficult-to-treat cancers can only be achieved 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 may also be disadvantages. First of all, there is no guarantee that the new treatment will work for you. And the new treatment could cause side effects. You may also not receive the new treatment in the trial. In a clinical trial, some people receive the experimental treatment while others do not, so scientists can compare the new and old treatments. But, according to Hutson, you will receive at least the standard of care if you have cancer.
“They won’t treat you like a guinea pig,” he said. “Technology has advanced so much that scientists and doctors know a lot about a new therapy before it even enters 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 for publicly and privately funded clinical trials at ClinicalTrials.gov. You can also consult with patient groups or disease-specific advocates.
According to Hutson, the clinical trial landscape is always changing. “There are lawsuits that open and close all the time,” he said.
Searching on your own can be overwhelming. Each study has specific rules about who can participate, which can be difficult to understand.
“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 type of cancer you have (type of cell), not just ‘breast cancer’: where it is located in your body, the amount and type of previous cancer . therapies you have received, the genomic profile of the tumor and your general health, before beginning your search.”
Several companies help match patients to trials, including some that use AI to do it. The services are usually free to patients, although you will probably have to give your consent to share your medical records.
It is important to discuss clinical trials as an option with your healthcare team. Your healthcare provider (HCP) may know of relevant trials or help you find one. Other healthcare professionals who specialize in your condition may be good sources of information about trials specific to you. (Those specialists may even be doing the research themselves.)
The HealthyWomen survey showed that almost 3 in 4 women would like to receive information about clinical trials from their healthcare professional. And nearly half (46%) of respondents said they would consider participating in research if their doctor recommended it.
But not all healthcare professionals are aware of the trials available for their condition.
“Your doctor may not mention participation in a clinical trial,” Hutson said. “If it’s something you’d like to know more about, you may have to ask. And even if they tell you they don’t have anything for you, that doesn’t mean there isn’t a test that might be perfect for your situation. You often have to be proactive and do the research yourself.”
Questions to ask yourself before enrolling in a clinical trial
Before enrolling in a clinical trial, it is important to understand what you are getting into. The study organizers must obtain 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 patients’ financial responsibility, all before you agree to participate.
“These [informed consent] The documents are usually long and it is advisable that the patient take them home and discuss them. [them] with your family, friends or an advocate before signing,” Hutson said.
Hutson suggests several questions to consider, including:
- Has the drug been studied before?
- Is there any published information about the study drug?
- How many other patients are or have been in the trial? What have your experiences been?
- Does the research sponsor pay for the study drug or will insurance cover it?
- What other financial obligations exist for participants?
- What are the risks of participating in the trial?
- What benefits or results could participants expect?
- Are there options at home or do participants have to travel?
The bottom line, according to Hutson: “Ask questions about anything you don’t understand.”
The role of your healthcare professional
Although you may be able to participate in a clinical trial from home, most involve some tests or treatments centralized at a study site, or a combination of at-home and on-site procedures.
Ideally, your healthcare provider(s) and the trial organizers will coordinate your care. Hutson suggests scheduling a call between your healthcare professional(s) and the study coordinator when you first sign up and as needed to make sure everyone involved in your care knows what is happening. If you are comfortable communicating electronically, you can use your patient portal to communicate updates to your doctor. You may also be able to link your patient portal to the trial site’s portal.
Ultimately, if all the legwork involved in participating in a clinical trial is too overwhelming, you can contact a care coordinator or patient counseling service through your insurance company (if they offer one) or hire a private patient advocate. These professionals can help with all stages involved in finding, navigating and participating in a clinical trial, including facilitating and coordinating communication between healthcare professionals.
This resource was created with the support of Pfizer, a member of HealthyWomen’s Corporate Advisory Board.
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