Treatment through a clinical trial may be an option for some people with leukemia. Several factors may influence your decision to join a clinical trial, so it’s important to gather as much information as you can.
If you have leukemia, your care team may recommend participation in a clinical trial at some point in your treatment journey.
Clinical trials are how researchers test the safety and effectiveness of new or improved ways to diagnose, treat, or prevent a condition or disease.
Navigating the ins and outs of clinical trials for leukemia can feel daunting at first. Keep reading to learn about the basics of clinical trials for leukemia, including when to consider one, what to know about eligibility, how to find a trial, and more.
If you have leukemia, receiving treatment through a clinical trial may come up at some point.
According to 2024 research, only about 7% of people with cancer participate in clinical trials, but that may be because many people are not offered a choice or made aware of the opportunity. Research suggests that many more people choose to participate when offered.
For example, a 2020 meta-analysis found that more than half of people with cancer who were offered participation in a clinical trial chose to join. People consider participating in a clinical trial for several reasons.
One misconception is that people only participate in clinical trials when they’ve exhausted all available treatment options or if they have a rare or aggressive type of cancer for which few treatments are available.
While this may be the case in some situations, it’s not true for everyone with leukemia.
Emerging treatments
Many clinical trials for leukemia and other cancers focus on evaluating new treatments or treatment combinations. The aim is to test the safety and effectiveness of these interventions before they’re used more widely.
Due to this, you may consider participating in a clinical trial if you want access to a new or cutting-edge type of treatment that’s not yet available outside of a clinical trial.
Close Monitoring
Clinical trial participants also tend to undergo more close monitoring. This is because trials follow protocols that require a certain number of check-ins and follow-up tests. If you’re interested in more frequent, attentive care during your leukemia journey, this may be a big plus.
Other reasons
Other aspects of clinical trials might also appeal to you. For example, you may find joining a clinical trial to be empowering, in that you’re taking a more active role in your treatment decisions. The idea of contributing to research that could help others may also be appealing.
Each clinical trial has its own specific eligibility criteria. These are called “inclusion/exclusion criteria.”
Inclusion criteria are things that allow you to participate in the clinical trial. Conversely, exclusion criteria are things that prevent you from joining a trial.
Typically, your eligibility for a clinical trial can depend on many different factors, including:
- the specific type of leukemia that you have
- the leukemia treatments that you’ve previously received
- any underlying health conditions that you have
- the results of certain lab tests
- the medications you’re currently taking
- your age
The clinical trial protocol will outline the inclusion/exclusion criteria. As you search for clinical trials, you can look at these criteria to see if you’d be a good match for a specific trial.
The
ClinicalTrials.gov is another online database where you can find clinical studies. However, it’s much broader and covers a wide variety of health conditions in addition to cancer.
Another resource to check out is the Leukemia and Lymphoma Society. On their website, you can request one-on-one support to find a clinical trial you’d be eligible for.
Larger cancer centers or health networks may also list the clinical trials for leukemia that they’re running. Some to check out include:
Remember that your care team is also a valuable resource. They’re likely to know of clinical trials in your area that you may be eligible for.
If you’ve found a clinical trial you think you’d be eligible for, the next step is to reach out to someone involved in the trial. They’re your resource for more specific information on the trial and what participating in it will be like.
You’re likely to have many questions about the trial. Some examples of things to ask include:
- What can you tell me about this treatment?
- Why do you think this treatment may be more effective than other treatments for my leukemia?
- What phase is the clinical trial in?
- Have previous trials tested this treatment? If so, what were the results?
- How long will the trial run?
- How many visits will be involved?
- What types of tests will I undergo, and how often?
- Which hospital or clinic will I need to go to while in the trial?
- Who will be in charge of my care during the trial? Will the trial team be in touch with my care team?
- How will you know if this treatment is working?
- What are the potential risks or side effects associated with this treatment?
- What will I have to pay for? Will my insurance cover treatment during the trial?
- How will participating in this trial impact my daily life? Will I need to take time off of work or school?
- Can I decide to leave the trial? If so, how will that affect me?
- Who do I contact if I have issues, questions, or concerns during the trial?
- How long do I have to make a decision about participating?
Try to take notes while discussing the clinical trial so that you can have them to refer to later. Consider asking a friend or family member to help you with this so you can focus on the conversation.
If you decide to join a clinical trial, the trial team will first need your informed consent. They’ll explain things like:
- the purpose of the trial, its potential risks and benefits, and the procedures involved
- that your participation in the trial is voluntary
- your right to leave the study at any time
- how your private information will be protected
Be sure to ask questions during this time if anything is unclear. The team will then provide you with an informed consent form to sign that contains the information you’ve discussed. If you still wish to participate in the trial, you can sign it.
The trial team will then want to do a variety of tests. These are often blood and imaging tests that help them to see if you meet the trial’s eligibility criteria.
Once your part in the trial begins, you’ll go to the visits and follow-ups outlined in the clinical trial protocol. In many cases, this can feel like you’re getting typical treatment for your leukemia.
As mentioned earlier, clinical trial participants often undergo more close monitoring. So, if anything feels different, it likely has to do with the increased attentiveness and frequency of the care.
While participating in a clinical trial, keep in mind that the researchers often don’t know the full extent of the risks and side effects of the treatment they are testing.
Because of this, it’s vital to let them know if you develop any concerning symptoms or problems while taking part in the trial. They can help determine if what you’re experiencing is due to the treatment or something else.
An important question regarding any type of medical care, including clinical trials, is whether insurance will cover the costs.
According to the
For example, your insurance provider will likely cover the cost of things like:
- doctor’s visits
- hospital stays
- conventional cancer treatments
- standard lab and imaging tests
Items your insurance may not cover include those specific to the research, such as the drug or treatment undergoing trial or additional testing or visits. However, the trial’s sponsor may cover these things instead.
The bottom line is that participating in a clinical trial may involve out-of-pocket costs.
Before joining a trial, it’s important to get a clear idea of which costs will be covered by your insurance or the study’s sponsor and which costs you’ll be responsible for.
Clinical trials can test new or improved treatments for cancers like leukemia. Receiving treatment through a clinical trial is an option for many people with leukemia.
Reasons you may opt to join a clinical trial include:
- a lack of conventional treatment options
- a desire to access more cutting-edge treatments
- an interest in receiving additional monitoring
Clinical trials involve several aspects, such as the study protocol, inclusion and exclusion criteria, and how costs are covered. When exploring clinical trials for leukemia, ask any questions that come to mind to see if a trial is a good fit for you.