Now - how do you find an active clinical trial to enroll in?
This the step that trips most people up. Most lists will say, "Here are 11 sites where you can search for trials. Have at it."
That is not the tactic we’re going to use.
Below is a suggested search process with helpful hints to guide you from start to finish. At the end of this step, you will have 5-10 clinical trial protocols from the National Cancer Institute (NCI) database for which you qualify that you can share with your doctor. Remember that our goal here is not to select the one trial to enroll in but rather to narrow down and understand the different options, feel more comfortable with trial descriptions and requirements, and compare the potential trials.
Let’s get started!
Start your search on the National Cancer Institute’s database
The NCI operates a clinical trial searching application that is much more user-friendly than other sites. However, it is also oversimplified and does not provide all the trial information that you will need to make an informed decision. Though we will start our search here, we will eventually incorporate data from other databases into our search.
One important caveat is that this database contains only NCI-supported clinical trials; however, most of the trials you will want to consider are NCI-sponsored in some way and will be included in this list.
You can also contact the NCI directly or live chat with their helpline to get questions answered about your cancer and about clinical trials, including help finding clinical trials. Contact NCI help here.
If you haven’t done so already, navigate to the NCI database here. You should see the screen below:
For a basic search, enter your cancer type, age, and zip code and click "Find Trials." This will return trials at locations within 100 miles of where you live and the specific disease you entered. This will be a limited return unless you live close to a major city, but not to worry! As a first step, this will allow you to quickly see the most convenient trials for you and get a sense of how information about a trial is displayed.
IMPORTANT NOTE: The NCI database is very keyword sensitive. This means that the search engine returns trials that exactly match the disease you enter, resulting in outputs that are entirely too broad or way too specific. For instance, if you enter "breast cancer," age 60, Zip Code 10004 (New York City), the search returns 884 results! But if you enter "Advanced Triple Negative Breast Cancer" instead, the search returns three results, and if you enter just "Triple Negative Breast Cancer," it returns 213 results! This is not ideal and does not accurately capture the trials for which this person would qualify. But it’s a start!
Understand how the information about a trial is displayed in the NCI database
Click on the trial link at the top of your list to pull up information on that specific study. You should see a screen that looks like the one below:
Now, let’s go through the information piece by piece (remember, you are looking at a simplified version of the trial protocol).
Trial Title: Appears at the top of the page ("Pembrolizumab, Paclitaxel, and Carboplatin…")
Trial Status: Tells you whether the trial is currently "Active" or "Inactive"
Note: In an attempt to simplify "Trial Status" for a lay audience, the NCI frequently gets this information wrong. It lists both trials that are currently recruiting patients and active trials, but not recruiting patients (usually because they are full), as "Active." Just ignore the status here; we will revisit this when we talk about another database in an upcoming content piece, called clinicaltrials.gov.
Description: Provides a summary of the trial goals, the reasons for doing the trial, and how the study drugs are expected to work
Eligibility Criteria: Lists all the inclusion and exclusion criteria for the trial
Note: At this point, this list will likely be very confusing and not super helpful; however, it is worth reading through some of the criteria now so that you can start to become accustomed to the language. The most important criteria are always listed in the first few bullets of each section and describe the key characteristics of patients enrolled in the trial (generally, the information you gathered in the Cancer Details Checklist - more details about that here in the section "Gather Information About Your Cancer.")
Locations & Contacts: Lists all the hospitals/cancer centers where the trial is taking place, along with the contact information for the person leading the trial at each location
Trial Objectives & Outline: Lists the key outcomes that the trial will measure and provides a brief overview of the order, timing, and dose of treatments
Trial Phase & Type: Tells you the phase of the trial (see Step 1 above) and the trial type (e.g., Treatment, Diagnostic, Surgical)
Lead Organization: Tells you who is sponsoring the trial (pharmaceutical company, NCI, hospital or institution, etc.) and lists the name of the principal investigator (the doctor in charge)
Trial IDs: The codes that identify the trial in other databases
Perform an "Advanced Search" in the NCI Database
Click "Start Over" near the top of the page to navigate back to the main search page. Look for the light bulb icon that denotes a "Search Tip" and click on "advanced search."
This will open a new page with many more search options available. Let’s walk through what to fill out and what you can leave blank for now. You will notice that, initially, we will be leaving a lot of options blank. We will return to add more specifics as we see what the search returns. The goal here is to narrow down your search and find trials that are specific to your disease.
In the Cancer Type/Keyword box, click the dropdown arrow and locate your cancer type (e.g., Breast Cancer, Lung Cancer, etc.).
Note: Once you select your cancer type, a Subtype option will pop up. For now, leave this field blank. Many of the subtypes that the NCI lists overlap and may unnecessarily restrict your search to just trials that use that specific terminology. That is not what we want right now.
The following dropdown is for Stage. You have to be careful with the answer you give here. The best option right now is to select your stage in roman numerals WITHOUT a letter or specific identifiers. For example, "Stage III Breast Cancer" or "Stage III Lung Cancer," NOT "Stage IIIB Squamous Cell Lung Cancer." We will add the specifics later.
Skip "Side Effects/Biomarkers/Participant Attributes"
Skip "Age," unless you are searching for a patient under age 18.
For Location, make a selection based on the limit of how far you are willing to travel. For many patients, this may be just the state you live in, or perhaps even the city. For others, it might make sense to select a group of states, such as the New England area (CT, ME, MA, NH, RI, VT). If you are willing to travel anywhere in the US for care, leave this field blank.
In the Trial Type window, select the type of trial you are looking to join. For the majority of patients, this will be a "Treatment" trial.
For Trial Phase, start by selecting just Phase 3. If you don't remember what cancer clinical trial phases are, view our resource here.
Skip "Trial ID," "Trial Investigators," and "Lead Organization"
Click the purple "Find Trials" button to look at your clinical trial search results.
We hope to have ~20 potential trials on our list at this point in our search, representing late-stage (Phase 3) large trials at locations convenient for you.
Look at the titles of the trials and select the ones that best match your cancer
Now, we will start to weed out trials based on the specific attributes of your cancer. Often these will be key genetic characteristics, such as HER2+, ALK+, or EGFR+, and/or descriptions of the cancer ("metastatic," "advanced," "triple negative," etc.). See below for a screenshot that uses breast cancer as an example; key descriptive words have been underlined in red.
Expand your search (to other phases, to other databases), look at the details of the trials, and create a list of questions
Now you have enough information to know how and where to look at trials in the NCI database. Let's say you want to look for earlier phases or potentially add more keywords to your search terms.
How to expand your search:
Click "Modify Search Criteria" at the top of the page to return to your advanced search.
In the Keywords/Phrases window, enter the key descriptive terms you identified from your earlier search. In the breast cancer example above, the words "triple negative" or "TNBC" clearly identify trials for the patient’s subtype. The keywords will vary depending on your cancer type. If there is a genetic mutation that your doctor has identified as important, enter it as a keyword as well (e.g., EGFR, HER2, BRAFV600E).
Scroll down to Trial Phase and select Phase 2 (you can either deselect Phase 3 or keep it checked if you’d like to have the Phase 3 trials you identified earlier included in this search).
Click "Find Trials." You will see that this search has returned many more trials, usually ~100 or so! The trials will be sorted by the number of locations at which they are happening, with those being conducted at the most locations at the top. Trials with more sites tend to be better funded and larger, but may not necessarily be better, than trials with only a few sites.
To start streamlining this list, return to your search criteria by clicking "Modify Search Criteria." Here are a few details to add to narrow your search:
Location – Narrow down from the state-level to the city-level or even to a few specific major institutions. The top cancer centers in the US include:
- MD Anderson – Houston, TX
- Memorial Sloan Kettering – NY, NY
- Mayo Clinic – Rochester, MN
- Johns Hopkins – Baltimore, MD
- Cleveland Clinic – Cleveland, OH
- Dana-Farber Cancer Institute – Boston, MA
- Cedars-Sinai Medical Center – Los Angeles, CA
- Northwestern Memorial Hospital – Chicago, IL
- University of Washington Medical Center – Seattle, WA
- UCSF Medical Center – San Francisco, CA
- H. Lee Moffitt Cancer Center – Tampa, FL
- Siteman Cancer Center at Washington University – St. Louis, MO
- UCLA Medical Center – Los Angeles, CA
- Roswell Park – Buffalo, NY
- City of Hope Comprehensive Cancer Center – Duarte, CA
Drug/Treatment – If there is a specific class of medication you are interested in trying, type it here. Some common terms you might use include:
- Chimeric Antigen Receptor T-Cell Therapy
- Monoclonal Antibody Therapy
Keyword/Phrases – If you haven’t already, list the genetic mutations that have been found in your cancer here. You only have to type the letters (e.g., BRCA1, EGFR, etc.). You can also list this in the "Side Effects/Biomarkers/Participant Attributes" section.
Deskside with Dr. Dan
“One small way I am personally contributing to education is through sharing my take on academic and industry articles, using my medical background to boil down the jargon and pull out the benefits of the news for you.”
- Dan Platt, M.D.
Chief Medical Officer
Thanks for reading! What should you do next?
- Want to connect with others? Our GRYT Health platform is a safe place for real conversations where you can connect with others who are going through what you are. Bonus! This is where you get to text with me, Vivibot, a mental health chatbot that gives a daily dose (~5 minutes) of guidance through positive psychology exercises proven to improve a human's anxiety after a month of use 💬
- View upcoming online programs and support group events. Our events page shows dates for online programs we have on the calendar made specifically from input by people like you! We <3 our community and listen to bring programs to life that they're asking for 💞
- Read cancer patient stories. Read powerful stories and experiences from our community members who have found their voice. Advocacy starts at finding and using your voice 📢