If you’re a caregiver for someone considering a clinical trial, you may have a lot of questions. These might include:
- What are the benefits of clinical trials?
- How can my loved one find a clinical trial?
- How should my loved one talk to their doctor about clinical trials?
- How can I support my loved one before and during a clinical trial?
As a caregiver, doctors might consider you an informal part of the study team. That’s because you may have been the first to notice changes in your loved one. Some studies look at caregiver-related issues, so you could even become part of a study yourself.
Here’s what you need to know to support your loved one in a clinical trial.
What Are the Benefits of Clinical Trials?
Every medical treatment must prove safe and effective before people can receive it. Clinical trials use human volunteers to test new treatments under controlled conditions so doctors and scientists can provide that proof.
There are many types of clinical trials. Some look at new ways to diagnose and treat diseases, while others may study how to prevent a certain disease. Clinical trials can study any aspect of medicine, including:
- Behavior changes that might improve health.
- Combining drugs in new ways.
- New drugs.
- New medical devices.
- Refinements to existing surgeries.
- Using existing treatments in new ways.
- Ways to improve life for people with acute or chronic diseases.
People have many reasons to participate in a clinical trial. They may want to:
- Help improve care for everyone with the same condition.
- Help doctors and scientists learn more about the disease.
- Get access to new medications or procedures not yet available to the public.
- Receive care from an expert research team that focuses on that medical condition.
Your loved one may have their own reasons for considering a clinical trial. Communicate openly about what they hope to achieve through a research study and also listen to their concerns.
How Can My Loved One Find a Clinical Trial?
Knowing that medical centers across the country conduct clinical trials is important. You don’t have to live in a big city to participate in medical research.
Still, finding clinical trials can seem complicated. Start by asking your doctor about your clinical trial eligibility for any local research studies.
The U.S. government runs the largest database of clinical trials in the world, which you can find at ClinicalTrials.gov. You can search ClinicalTrials.gov yourself to find studies anywhere in the country.
Major medical centers often list on their websites the clinical trials where their doctors and scientists participate. For example, UPMC Hillman Cancer Center’s research database lets you search for cancer clinical trials by type of tumor and ZIP code.
Many nonprofits focus on one or more specific diseases. These organizations may also have clinical trial finders on their websites that highlight relevant research.
How Should My Loved One Talk to Their Doctor About Clinical Trials?
Talking to a doctor about clinical trials is always a great first step. Your loved one will need a lot of information to decide about joining a clinical trial, and their doctor knows their specific situation and can advise them.
You might encourage your loved one to write down a list of questions for their doctor. These might include:
- How do I know if I’m eligible for a clinical trial?
- How will researchers keep me safe?
- What are the risks and benefits of participating in a clinical trial?
- What does informed consent mean?
- What happens if I want to withdraw from a clinical trial?
- What questions should I ask if I get an invitation to join a clinical trial?
Your loved one’s doctor may not have exact answers unless they’re also a researcher on the trial. But they can help everyone understand the basics.
For example, what’s the study’s purpose? What’s the study testing and how does it get data from participants?
Understanding that clinical trials may involve risk is also important. But routine medical care — and daily life — involve risk, too.
You should understand the specific risks of the trial your loved one is considering. How serious are those risks? How likely are they to happen?
It’s also important to understand what side effects are likely. What side effects did earlier participants have in the same trial?
Just as each person must give their permission to participate, people can withdraw from a clinical trial at any time.
How Can I Support My Loved One Before and During a Clinical Trial?
Your loved one may need support while deciding whether to join a clinical trial. As a caregiver, there are many ways you can support them. For example, you can:
- Educate yourself on the study drug or treatment protocol before the trial starts. You may need to offer medication reminders or give the medication.
- Go with them to talk to their doctor about medical research. You can bring a written list of questions and then write down the answers for further discussion later.
- Help them fill out forms and answer questions. Clinical trials come with lots of paperwork.
- Search online for appropriate clinical trials. You may help identify clinical trials that are a good fit for your loved one.
- Participate in the informed consent process as appropriate. That means helping them understand all the possible risks and benefits of joining the trial. Informed consent also means understanding what they’ll need to do in the trial.
You’ll also want to brainstorm about what transportation your loved one will need for medical appointments or tests related to the study. This may include extra appointments and laboratory testing or imaging.
Know that you’ll play a role as a trusted communication partner before, during, and after the clinical trial. The care team will ask you to report any side effects or changes in your loved one. Talk about how and when you should contact the care team.
Clinical trials can last for months or years. Encourage your loved one throughout and listen when they need to voice their concerns or frustrations.
Remember to seek support for yourself when you need it. Your own well-being is important, too.