05/06/2021 By Dr. Dan Platt
In the first four parts of this cancer clinical trial series of posts by Dr. Dan, we covered:
- What is a Cancer Clinical Trial and a Common Misconception
- Cancer Clinical Trials: Basics Explained (Phases & More)
- Is a Cancer Clinical Trial Right For You?
- How To Find Active Cancer Clinical Trials Using National Cancer Institute’s Database
This fifth and final part of this series will cover three different places to find active cancer clinical trials aside from the NCI Database as well as how to go about contacting them / bringing them up to your care team.
Using ClinicalTrials.gov
To organize and run a clinical trial, the sponsor (whether it be a company, institution, or individual) MUST register the trial with the government and provide all the trial details in a central repository at ClinicalTrials.gov. Thus, this site represents a compendium of every trial for every disease and is the most complete and up-to-date resource for finding information. However, it is intended for a medical audience and can be challenging to navigate if you do not have prior research experience.
Recommendation: Use ClinicalTrials.gov to confirm information about trials you have found on other sites, particularly around the status of the trials. To do this, look up the NCT code for the trial by clicking the “Trial IDs” dropdown on the NCI page; then click the link (format NCTXXXXXXXX) next to “ClinicalTrials.gov ID.” Alternatively, navigate to the clinicaltrials.gov website and type the trial ID or trial title into the search window.
It is essential to check the status of the trial in clinicaltrials.gov! This database provides a much more detailed snapshot of how trials are progressing, and only trials with the status “Recruiting” are open to enrollment! Take a look at the screenshot below:
Major Cancer Center Databases
The websites of major cancer centers in the United States have searchable lists of all ongoing trials performed at the center. An example can be found at the Memorial Sloan Kettering “Find a Clinical Trial” section of their website. These trials are usually also found in the NCI Database and must appear in the clinicaltrials.gov database, but the sites can still be helpful if you are looking for treatment at one clinic in particular.
If you can’t find these sections on a major cancer center’s website, use the contact form and ask where it can be found.
Less Reliable Databases: Drug & Biotechnology Company Website and Clinical Trial Listing Services
While not as up-to-date as clinicaltrials.gov, these two sources can help you expand your search and find more clinical trials to ask your medical team about.
Examples of these are:
- Drug & Biotechnology Companies – Genentech/Roche, Merck, Novartis
- Clinical Trial Listing Services – www.centerwatch.com
Now that you’ve narrowed down your list, the next step is to sort the trials into three groups:
- Trials you are interested in
- Trials you want to ask more questions about (unsure if you qualify, uncertain about the trial drug, etc.)
- Trials that aren’t for you
Here’s what to do with those first two groups:
Trials that interest you – Read about the details of the trial in each of the dropdowns. Print the protocol and write on the front page what you like about the trial, along with any questions you have for your doctor. Feel free to highlight or underline words you don’t know, focusing on the inclusion and exclusion criteria. Perform an online search to learn more about what each term means or speak with a member of your care team to get an explanation (you can also contact the NCI’s LiveHelp Team at 1-800-4-CANCER (1-800-422-6237) or email me at dan@grythealth.com).
Trials you aren’t sure about – This might be an extensive list! Try to create a ranking system for this group. For instance, you might move trials to the top of the list conducted at an institution close to you or a prestigious cancer center. Maybe you’re more interested in a specific type of therapy, or perhaps a trial appears to be targeting a particular mutation, and you are unsure about whether it applies to you. After you’ve put the trials in some order, create a table for yourself with the following information:
Trial Title
Trial Identifier – This can be found in the “Trial IDs” dropdown. You want the ClinicalTrials.gov ID that starts with the letters “NCT.”
Primary Question – Try to be as specific as possible. Instead of just asking, “Do I qualify?”, focus on the piece of information that you are unsure about (the thing that got this trial placed in this group, to begin with!). Maybe the trial is looking for patients with a specific mutation, and you are not sure whether you have been tested for it (e.g., “Do I have the BRAFV600E mutation?”). Or maybe there is a specific line in the inclusion criteria that you find confusing (e.g., “What does ‘Patients with Stage IIIB and IIIC disease are eligible if they are not candidates for combined chemotherapy and radiation mean in the context of my lung cancer?”).
Important Inclusion/Exclusion Criteria – These will be the first one or two bullets in the section.
Contact Your Care Team And/Or The Team Running The Trial
Set up an appointment with your oncologist to review the protocols and what you’ve learned, or email the protocol to your oncologist along with the key questions you identified during your search.
A few simple questions during the conversation with your doctor can get you a long way:
- Do I qualify for this trial?
- What is the potential benefit of this trial compared to my other treatment options?
- If you think one or more of these trials may be right for me, can you please help me contact the principal investigators and provide them with all the information they need about my cancer?
You should also definitely contact the study site directly. You can find this information in the NCI Database, under the “Locations & Contacts” dropdown. To avoid any confusion (and very long emails!), it is best to start with a phone conversation, if possible, with email follow-ups.
Remember: this is your decision! A clinical trial may, or may not be, the best choice for you. Be sure to get ALL your questions answered, especially around the trial protocol and trial length. It may be helpful to create a calendar of your expected appointments to understand the time requirements better. It is always a good idea to inquire thoroughly about the efficacy expectations of the treatment and how you can expect to feel in the weeks after your treatment.
If you have any questions that you think I can help answer, you can email me at dan@grythealth.com.
Happy hunting and good luck,
Dr. Dan & The GRYT Health Team
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
