Practical Advice For Your Clinical Trial Search
Last updated: February 2023
Patients often hear a lot about the importance of clinical trials as a means of finding new treatments for bladder cancer. Less discussed is how to actually find and choose a trial.
A clinical trial may be the best or only option
Sometimes with advanced bladder cancer, a trial may be the best or only option. But even earlier stage patients are often encouraged to participate in trials. Sometimes a patient’s doctor might have a specific recommendation. But in other cases, patients may want to do their own research as well.
If you are a “hands-on” and research-oriented type of patient or caregiver, you might want to do some research on your own and then have an educated conversation with your doctor. I will warn you up front that the clinical trial terminology can be intimidating, but I believe it is still worth your effort if you are interested. If nothing else, you will become a better-informed patient.
Understanding clinical trial terminology
You first want to be sure you understand some of the basic terminology regarding clinical trials. Clinical trials are described as Phase I, 2,3, or 4 (this is not the same thing as the “Stage” of a patient’s cancer). For helpful basics on clinical trial terminology see the American Society of Clinical Oncology (ASCO) site here.
What is a basket trial?
And another helpful concept to understand when searching for trials is that of the “basket trial.” In recent years, researchers have realized that different cancers may behave similarly if they are caused by the same gene mutation. In the past, we thought of breast cancer as entirely distinct from bladder cancer and from lung cancer. What we have now learned, is that regardless of where the cancer originates, if it is caused by the same mutation, it may respond to the same drug. Basket trials welcome patients with a wide range of cancers that are due to the same mutation.
Once you have a basic understanding of the relevant vocabulary, you’re ready to peruse the main website that lists clinical trials: www.clinicaltrials.gov. It is a site run by the National Institutes of Health and includes information on clinical trials worldwide. Let’s walk through a hypothetical search for a trial for a patient for whom BCG has not worked.
Focus on getting a general sense of the trial
This is part where the process can start to seem intimidating. There’s a lot of information on this site and much of it is intensely medical. But remember, you are just trying to get a general sense of the trials that might be relevant for you. You will then take that information and talk with your doctor about it. It is simply a tool that may lead to more options.
Navigating the clinical trials finder tool
The main page of clinicaltrials.gov is a search interface that is fairly straightforward. First, you must choose if you want to see “All studies” or just “Recruiting and not yet recruiting studies.” The difference is that “All studies” will bring up past studies that have ended. You want to find studies that you might be able to participate in, so you want “Recruiting and not yet recruiting studies.” This will give you results that include studies currently recruiting patients and those that will be in the future.
The next item to enter is “Condition or disease.” Here you can simply type “bladder cancer” (the quote marks are not necessary when you enter it). In the next box, it asks for “Other terms.” Here, for the sake of example, let’s get more specific. Let’s pretend we are searching for trials for patients who have been unresponsive to BCG.
Use key terms
The tricky part of searching is that it is very helpful to know the key terms that a study’s title might include. Of course, you’re not likely to know this until you do some searching. I noticed that the phrase “BCG-unresponsive” is often used.
You want to search in a specific enough way so that results are not overwhelming. For instance, in early April, when I entered just “bladder cancer” as the disease and made no entry in the “other terms” box, I got 196 studies in the United States related to bladder cancer that were “currently recruiting” or “not yet recruiting.”
Limit your search for more specific results
If you are a patient for whom BCG hasn’t worked and you want to explore trial options, you want the search to return more limited results. I tried searching with “BCG-unresponsive” in the “other terms” box. I limited my search to the United States and did not specify any particular state (many studies take place at multiple sites across the country).
This much more limited search resulted in 8 studies. You can then click into each one and learn more about it. Do not be intimidated by the extensive medical jargon! You will understand some of it and you can talk to your doctor about the rest. It is simply a means for you to explore options. You don’t have to understand every detail. As you get more comfortable with the website, you can search in different ways and experiment with different terms.
After researching, bring questions to your doctor
I wish there was someone to do all of this work for patients and families but the reality is that everyone in the health care system is overburdened. You are helping yourself tremendously if you can do some basic research and then go to your doctor with questions. That conversation can help guide your treatment decisions and empower you as a patient.
Has cancer impacted your mood during the holidays?