Finding a clinical trial can be time consuming and challenging. Luckily, there are resources to help.
Many patients assume that their doctor will know about and recommend the best clinical trial for them, but this is usually not the case. This isn’t a reflection on the quality of your doctor, but rather a reflection of how complex cancer is and how many active trials there are!
Even if you have an oncologist who specializes in gastrointestinal cancer, doctors need to understand the nuances of multiple types of cancer, as well as the specifics of each patient’s medical history and personal goals. In addition, new clinical trials come up on a regular basis, which can make incorporating trials into practice very challenging. And at research centers, doctors are most likely to focus on trials available at their institution — which excludes many other potential options.
However, your oncologist can be a great partner in assessing potential trials once you find a list of potential trials.
In the US, there are a few approaches you can take to find clinical trials:
There are services out there that can help connect you to a clinical trial — sometimes called “concierge” services. If you choose this option, an individual or team will help you find potential trials.
Concierge services often have mixed reviews, so it’s important to take a look at the scope and focus of services you’re interested in to know their possible value and limitations for you. There are many concierge services available online. xCures and Cancer Commons are good places to start your search.
Here are some questions to ask:
Take a look at cancer centers in your area that offer a broad number of trials. When you’ve found some centers that look like a good fit for you, call them or visit in-person and establish yourself as a patient, if you are able.
This will increase the breadth of trials that your care teams are aware of. Every cancer center may have a different clinical trial consideration process, so make sure you are aware of how patients are considered for active trials at each institution.
There may be resources available to help with the financial impact of these appointments. Speak to the clinical trial organizer or join COLONTOWN to find out more.
This can be a cumbersome process, but it ensures that you are searching for trials in terms of your own goals and interests. Many people feel empowered, accomplished and that they’ve left no stone unturned when they search for trials themselves.
There are many resources to help you with this process:
It’s important to note that “on your own” doesn’t mean you have to do it yourself! You may have a carepartner or loved one who is great at research and organization and is looking for a way to help out. They don’t need to know tons about science or medical terminology to apply their skills to finding clinical trials. They will likely appreciate the opportunity to help you.
Searching for trials yourself can seem daunting because of the topic. But you make decisions every day, like where to go to dinner or what you’re going to wear to work. It can be helpful to think about the trial-finding process in similar terms.
Imagine you’re planning on watching a movie tonight. The selection process would start with you thinking about yourself (like considering which genres of movie you enjoy). Then, you might look at some suggested movies (like a recommendation list from a streaming service). You might narrow the movie list down based on key info (like who the actors are). Then, you look specifically at the plot, reviews, etc to make a decision.
Searching for trials employs skills you practice every day! Granted, the magnitude of this decision is greater, and the subject matter may be complicated, but you are more prepared than you might think.
Dr. Tom Marsilje, a cancer researcher and colorectal cancer patient advocate, founded the clinical trials neighborhoods in COLONTOWN, PALTOWN’s first patient and caregiver community. We seek to honor his legacy by continuing his focus on access to clinical trial information and empowering patients to find the best treatment options available. Dr. Marsilje passed away in the fall of 2017.
This section goes over some dos and don’ts that build on his personal tips for researching clinical trials. He believed strongly in “getting your planes on the runway” — identifying your trial options before you need to make a decision, and in giving patients the tools to do their own research. As he said, “no MD or PhD required!”
Make sure you have all the information you need about your disease. Check out this section to get started!
Like we’ve said throughout this guide, thinking about your personal goals is the first step to finding a trial. What do you want to accomplish — both in your cancer treatment and in your personal life? Having a clear picture of your goals will help guide your decisions as you search for and find trial options for you.
Make sure that you and your doctor are on the same page when it comes to treatment goals. Have honest discussions about what you want to accomplish, and be willing to listen when your doc explains their goals too. It’s possible that you and your doctor will disagree about treatment goals. Make sure that your family and loved ones understand your goals as well.
Take a look at trial options early on, before you need them. Learning how to analyze trials can feel like learning a whole new language. If you start preparing early, it makes it much easier to have a list ready to go when you really need it.
Clinicaltrials.gov is the largest clinical trial database in the world, and contains trials currently conducted in the US, as well as some abroad. It contains some limited standard searching functionality.
Trial-finding tools can be a great first step. They provide customized searches of clinical trials for cancer-specific factors. It’s important to note that no trial finder is a one-stop-shop — you should try multiple trial finders, compare the results, and put together a list of options. Check out Ancora.ai, Trialjectory or the FightCRC Trial Finder to get started. The FightCRC Trial Finder is the only CRC-focused tool, and is for late-stage MSS patients specifically.
You might hear about trial recommendations from your doctor, fellow patients, COLONTOWN members, your biomarker testing report, or your cousin’s neighbor’s best friend. Keep a pen and paper in your bag, or start a list in the notes app on your phone of trials to follow up on. Make sure to get the NCT number or trial name so you can find it later.
COLONTOWN University offers a short list of trials in the Featured Clinical Trials Learning Center. These trials are not better than other trials you may find — we feature trials whose sponsors or lead investigators have worked with COLONTOWN University to provide information to members in a patient-friendly format. This is a good place to get familiar with trial vocabulary.
You can also check out our Lecture Hall for videos about current trials and upcoming research.
For stage IV MSS patients, COLONTOWN offers a workshop class called Searching Safari. This class can help you get started on your clinical trial search journey.
Few people can just drop anything and fly anywhere to participate in a trial. Although there are some exceptions, most trials are so experimental that prioritizing geographic location and reducing travel and financial upheaval to you and your family should be a major factor in choosing a trial.
You can limit your search of the trial tools to only show trials in areas that you can easily get to (although you should watch our clinicaltrials.gov tips video for help with this!).
This will lower the trial numbers you get in your search results dramatically. Once you have that list (usually <10 options for most people) that becomes a much less intimidating list to look through.
You can narrow your list even further by throwing out trials that have requirements you obviously don’t meet (like number of prior therapies, age, cancer stage, etc).
People sometimes think that their doctor will know about every clinical trial option available to them — but oncologists are most familiar with the trials they are personally involved in. So once you have a list of potential trials, print out the details and take them to your team.
Your oncologist should be able to tell you if they think that you would be a good candidate for each trial and why. This is a good opportunity to ask about both medical and personal factors. Does your doctor think the phase is aligned with your risk profile?
If a trial has been running for a while, you may be able to access preliminary results and find out what types of responses and side effects other patients have had. While this is not going to predict how you will respond as an individual, it can give you a general idea of what you might expect. Understanding trial results can be tricky, but don’t worry — we can help! Check out this post from our Lecture Hall Learning Center to learn more about how to understand and interpret trial results.
By this point your list is usually relatively small. If you are a member of one of COLONTOWN’s clinical trials neighborhoods, you can look through/search the discussion threads, and also at that point ask your COLONTOWN neighbors and our scientific leadership team about a specific trial. By joining COLONTOWN, you also gain access to the Alanna Project — a database of trials that COLONTOWN members have participated in, including their first-hand experiences with each trial. Join COLONTOWN here!
Like Dr. Marsilje said, it’s essential to get your planes on the runway. Don’t wait until you have run out of standard-of-care treatment options. Make sure you have your list of trials available to you before you need them, so if you are stressed about experiencing progression on a specific treatment you have other options ready to go.
Many trials mention specific genetic mutations, so it may seem like you need to find a trial that focuses on whatever mutations you may have — but this isn’t true. Of course, if a trial is for BRAF patients and you don’t have this mutation, you can’t enroll. However, there are many trial options that may provide benefit for you, based more generally on stage, cancer type, or other factors.
Trials often have inclusion and exclusion criteria based on health markers, such as ECOG status, kidney and liver function, blood test results and more. Make sure to line up trial options while you are in good health and can qualify for trials.
Trials are separate from standard-of-care. You are trying to pick the best trial option, not the hospital — and often they will not be the same place. An oncologist at a particular cancer center will often (at best) only know trials at their own hospital, which unnecessarily limits choices. This is why trial-finding tools are so important.
Ultimately, it’s important to know that clinical trials are not magic. Similarly, be realistic about standard-of-care treatment outcomes. Clinical trials can be a very helpful option in your cancer journey and can expand your treatment options, but finding the “perfect” trial does not guarantee that you will have a good response to the treatment.
The National Clinical Trials Network (NCTN) is a collection of organizations that coordinate and support clinical trials at more than 2,000 locations across the US, Canada and internationally.
The organizations below provide patient-friendly materials to help offer more information on specific clinical trials:
The Cancer Trials Support Unit offers enrollment information on current NCI-sponsored trials in the United States. It is searchable, and includes locations, target enrollment, and how many slots are still available. If you are in Australia or New Zealand, the Gastrointestinal Cancer Institute provides information on enrolling trials here. Click on the grey “Clinical Trials” box in the lower right-hand corner.
Join one of our COLONTOWN Facebook groups:
Want to join? Fill out the registration form here.
COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.