Caribou: How to Find a Clinical Trial That's Right For You

July 31, 2020

Caribou

Caribou

July 31, 2020

Finding a cancer clinical trial that is right for you and your cancer can be a challenge. It’s important to remember, you may enter a clinical trial at many points in your treatment journey. If you are thinking about joining a clinical trial, the best place to start is to speak with your doctor or another member of your healthcare team. 

Often, your doctor may know about a clinical trial that could be a good option for you. But you don’t have to wait for your doctor to recommend a clinical trial. Many people with cancer actively look for clinical trials online or in other places, hoping to find more options for treatment. 

If you decide to look for trials on your own, speaking with a professional, like a Healthcare Advisor, can help guide you in your search for finding the right clinical cancer trial for you.

Step 1: How to start your search

It will be easier to find a clinical trial fit for you with more information gathered about your specific cancer diagnosis These details of your diagnosis will be used to compare the eligibility criteria of any trial that interests you. 

Eligibility criteria, such as your age and type and stage of cancer, are the requirements that must be met for you to join a clinical trial. A Cancer Clinical Trial Checklist will help you with your search for the right trial. 

Step 2: Finding a Trial

Once you have filled the checklist about your cancer diagnosis, you can now begin a search for relevant clinical trials. There are  many search engines that can match you with appropriate clinical trials for cancer.

National Cancer Institute (NCI) pays for most government funded cancer clinical trials. Their website connects you with lists of clinical trials that are taking place across the United States and internationally. You can search the list by the type and stage of cancer, by the type of study (for example, treatment or prevention), or by zip code.

The National Institutes of Health (NIH) has an even larger database of clinical trials, but not all are cancer studies. It contains trials that are in NCI's list as well as trials sponsored by pharmaceutical or biotech companies that may not be on NCI's list.

CenterWatchSM keeps a list of both industry-sponsored and government-funded clinical trials for cancer and other diseases. You can search their list by location, cancer type, or drug name.

In addition to NCI's list of cancer clinical trials, you may want to check a few other trial lists Other places to look for lists of cancer clinical trials include:

There are also many major cancer centers that sponsor or take part in clinical trials. You can search the NCI’s database of cancer centers and clinics that offer clinical trials. Visit their websites to view  a list of the clinical trials taking place at their institutions.

Step 3: What to look for in the trials that interest you

Now that you have filled the cancer details checklist and found trials that interest you, the next step is to take a closer look at the protocol summary for each trial. 

The study protocol is the written plan for what will happen during the  clinical trial. It’s submitted to the Food and Drug Administration (FDA) and to an Institutional Review Board (IRB) for approval before a new treatment can be studied. Within the study protocol, you can find the following information:

  • The purpose and goals of the study

  • Information about the treatment being tested (such as names and doses of drugs to be used in the study), often including results of studies done before

  • The phase of the study and how many people will be in it

  • The study’s eligibility criteria

  • Location and length of the study

  • What tests will be done during the study and how often they’ll be done

  • Other information that will be collected on participants

HELPFUL TIP: Print out or save clinical trial summaries, including the protocol, eligibility, and locations for trials that you are interested in. This information should be shared with your oncology provider and will also help you decide if you should contact the individuals conducting the trial directly.

It is important to ask specific questions before joining a clinical trial. Asking these questions to the institution conducting the study helps to narrow your list to trials that are fit for you. 

Each clinical trial is unique, with its own possible benefits and risks. Before you decide to take part in one, you may want answers to these questions. Some people take notes, record discussions, or bring a friend with them to help recall the answers and think of other questions:

  • Why is this study being done?

  • What’s likely to happen if I decide to take part or decide not to take part in the study?

  • Who will I contact if I have problems, questions, or concerns?

  • What are my other options (standard treatments, other studies)? What are their pros and cons?

  • How much experience do you have with this particular treatment? With clinical trials in general?

  • What were the results in earlier studies of this treatment? How likely are they to apply to me?

  • What kinds of treatments and tests would I need to have in this study? How often are they done?

  • Will this require extra time or travel on my part?

  • How could the study treatment affect my daily life?

  • How will we know if the treatment is working?

  • Will I have to be in the hospital for any parts of the study? If so, how often, for how long, and who will pay for it?

  • Will I still be seeing my regular cancer doctor? Who will be in charge of my care during the study?

  • If I am harmed as a result of the research, what treatment will I be entitled to?

  • How long will I be in the study? How long will the study last?

  • Are there reasons I would be removed from the study? Are there reasons the study might be stopped early?

  • Is long-term follow-up care part of the study? What would it involve?

  • If the treatment is working for me, can I keep getting it even after the study ends?

  • Will I be able to find out about the results of the study?

  • How long do I have to make this decision?

HELPFUL TIP: Don't worry if you can't answer any of the questions above. The main idea is to narrow your list of potential trials. If you are having difficulties understanding the protocol summaries, you may also want to talk with your doctor or a Caribou  Healthcare Advisor during this process. 

If you are still interested in an appropriate clinical trial after having discussed these questions, then you are now ready to speak with your doctor or an expert directly involved with the study. 

I’ve found one I’m eligible for, now what?

Contact the research team and your doctor!

Once you’ve confirmed your eligibility for a study, deciding if it’s the right one for you can still be hard. There may even be more than one study that looks promising. Again, it’s important to learn as much as you can.

Speak with someone connected to the study. The protocol summary should include the phone number of a person or an office that you can contact for more information. Both the clinical investigator or principal investigator (PI) – the person in charge of the study – or a research coordinator should be able to discuss all of your questions. The research coordinators are usually nurses and often serve as a link between study patients and their doctors. One of their jobs is to make sure that people meet eligibility criteria before they get into a study. They also make sure that the study protocol is followed for each patient. 

If you haven’t done so already, talk to your doctor about the clinical trials that you have been looking at. Bring in whatever information you can, including pre-prepared questions, so that you both can figure out your best option. 

We know that this process can seem intimidating but you don’t have to do it on your own. Contact a Healthcare Advisor today and get one on one help as you navigate finding a cancer clinical trial that is right for you. 

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