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Making Decisions and Managing Your Treatment
At one time, clinical trials were done only at major medical centers. Many patients had to travel a long way and were treated by doctors they didn’t know very well. For some trials, especially with phase I and some phase II studies, this can still be the case. But this isn’t always a bad thing. Some people prefer to be treated in major cancer centers because of their experience, reputation, and resources. The hassles of traveling must be weighed against the chance of being helped by the treatment.
Today, patients have more options. This may include staying closer to home during a study or even staying with their own doctors. Your doctor may or may not be involved in clinical trials. If they are, they might have one that is a good fit for you. Whether they have the right study for you is a question worth asking. And know that while clinical trials are now done in many places, the same rules are there to protect patients.
Most people who take part in clinical trials hear about them from their doctors. But you don’t have to wait for your doctor to bring up a clinical trial. People with cancer can also look for clinical trials online or in other places to find more options for treatment.
There are groups that provide ways to search for clinical trials on their websites. Many of these groups also have people who can help you with your search.
Search results often include a description of each study, factors that people must meet to go into the trial (eligibility), and a contact person. These sites also help you focus your search using factors like your type and stage of cancer, the kind of treatment you’re looking for (chemotherapy, immunotherapy, radiation therapy, etc.) and where you live.
There are several websites that give details about clinical trials for all types of cancer. The clinical trials on each of these sites may be a bit different, but most trials will be on all sites. Many of these groups also have a phone number you can call for help with your search. Here are some of the most often used resources.
Many cancer advocacy groups offer help in finding clinical trials that might be a good fit for you. Because many of these groups focus on a specific type of cancer, they can help you find trials for your type of cancer. A list of some of these services can be found on the cancer.net website. If you don’t see your type of cancer on this list you can search the internet for advocacy groups.
Clinical trials are also sponsored by pharmaceutical and biotechnology companies. These companies must prove their medicines or devices are safe and effective before they can be marketed. They may list the studies they’re sponsoring on their websites or offer toll-free numbers so you can call and ask about clinical types.
Finally, there are doctors, medical centers, foundations, volunteer groups, and other non-profit groups that sponsor clinical trials.
Some also offer matching systems for the studies they sponsor. This can be helpful if you’re interested in a specific experimental treatment and know which company is developing it.
Note: This is not a complete list of all clinical trial sites. You can find others listed on the internet. Before choosing a site to use, you should check to see if there is a fee, how they keep your personal information safe, how they choose the clinical trials to list, and if they receive money to rank or list trials.
The study protocol is the written plan for a clinical trial. It’s sent to the Food and Drug Administration (FDA) and to an institutional review board (IRB) for approval before a new treatment can be studied in people.
A protocol describes:
The lists of clinical trials that are available online often include summaries of these protocols with key points. Research team members may also have protocol summaries or other information they can share with you.
Study protocols can be very long and complex. They aren’t written with patients in mind, so making sense of them can be tough. Often, the most important information for patients is the eligibility criteria and any details known on the new treatment.
Clinical trial lists may not contain all of the eligibility criteria. If you’ve found a study you think you might qualify for, you should be able to find contact information for someone who can give you a full list of the requirements.
Once you’ve found a clinical trial and think you are eligible for it, deciding if it’s the right one for you can still be hard. There may even be more than one trial that looks like an option. It’s important to learn as much as you can.
Talk with someone linked to the clinical trial. This could be the clinical or principal investigator (PI) – the person in charge of the study – or a research coordinator. Research coordinators are usually nurses. One of their jobs is to make sure that people understand the trial and meet eligibility criteria before they become part of a study. They also make sure that the study protocol is followed for each patient. The research coordinators often serve as links between study patients and their doctors.
Both PIs and research coordinators should be able to answer your questions about the clinical trial. They can give you answers about the clinical trial, but they probably won't have information about other studies you might be thinking about. What’s more, they could be biased (even if they don’t mean to be) toward their own study.
Talk to your cancer or primary care doctor about the clinical trials you’re looking at. Share the details you have so that your doctor can help you figure out what might be right for you. No doctor knows about every clinical trial being done, but your doctor knows your medical situation best and can probably tell you if the study is worth thinking about. This can take some time, so you might need to make a special appointment.
You might also want to get a second opinion from a doctor not connected to the clinical trials you’re looking at. Doctors who are well known in their fields usually know about the latest experimental treatments, and they may be able to point to those that look like a better fit for you.
You can find some information on your own. Try to find out if the new treatment has been studied before or if it’s now being studied in other diseases including whether any results are available.
Finally, talk to friends and family members. While the final decision is yours, their ideas may give you insight into things you hadn’t thought about.
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.
American Society of Clinical Oncology. Finding a Clinical Trial. Cancer.net. https://www.cancer.net/research-and-advocacy/clinical-trials/finding-clinical-trial. Approved November 2018. Accessed August 3, 2020.
National Cancer Institute. Clinical Trials Information for Patients and Caregivers. Cancer.gov. https://www.cancer.gov/about-cancer/treatment/clinical-trials. Reviewed February 6, 2020. Accessed July 29, 2020.
National Institutes of Health. NIH Clinical Research Trials and You. https://www.nih.gov/health-information/nih-clinical-research-trials-you. Reviewed October 20, 2017. Accessed July 29, 2020.
Last Revised: August 18, 2020
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