How to Find a Cancer Treatment Trial
Introduction
This guide will help you to look for a cancer treatment clinical trial that might benefit you. It is not intended to provide medical advice. You, your health care team, and your loved ones are in the best position to decide whether a clinical trial is right for you.
This guide will help you to
- gather the information you need to begin your search for a clinical trial
- identify sources of clinical trial listings
- learn about clinical trials that may be of benefit to you
- ask questions that will help you decide whether or not to participate in a particular trial
A Word About Timing
Many treatment trials will only take patients who have not yet been treated for their condition. Researchers conducting these trials are hoping to find an improved "first-line" treatment option for that type of cancer.
- If you are newly diagnosed with cancer, the time to consider joining a clinical trial is before you've had surgery, chemotherapy, radiation, or other forms of treatment (tests to diagnose your cancer are okay). However, don't delay treatment if waiting could harm you. Talk with your doctor about how quickly you need to make a treatment decision.
- If you have received one or more forms of treatment and are looking for a new treatment option, there also are many clinical trial options for you. You may want to look for trials that are testing a new follow-up treatment that may prevent the return of your cancer. Or, if your first treatment failed to work, you may want to look for trials of new “second-line” or even “third-line” treatments.
Before You Start: Steps 1-3
This section will help you to
- have a better understanding of clinical trials
- gather information you will need in order to locate clinical trials that are appropriate for you
Before You Start: Step 1: Understand Clinical Trials
This guide assumes you already know what clinical trials are and why you might want to join one. If you need to, review your understanding of clinical trials before you continue the steps in this guide.
The Learning About Clinical Trials section of this Web site offers a variety of articles to help you understand what cancer clinical trials are, why they are important, and how they work. The articles also describe the different phases of clinical trials and will help you to better focus your search for trials.
Before You Start: Step 2: Talk With Your Doctor
When considering clinical trials, your best starting point is your doctor and other members of your health care team.
Your primary care physician, cancer doctor (oncologist), surgeon, or other health care provider might know about a clinical trial you should consider. He or she can help you determine whether a clinical trial might be a good option.
NOTE: In some cases, your doctor may be reluctant to discuss clinical trials as a treatment option for you. Some doctors are unfamiliar with clinical trials, cautious about turning your care over to another medical team, or wary of the extra time that joining a clinical trial might require of them and their staff. If so, you may wish to get a second opinion about your treatment options and clinical trials.
Remember, you do not always need a referral from your doctor to join a clinical trial.
If you are eligible to join a trial (discussed in Step 3), the final decision is up to you. However, be sure to consider the professional opinions of your doctor. He or she may present very specific reasons why a clinical trial may not be beneficial for you right now.
Before You Start: Step 3: Complete the Diagnosis Checklist
Before you begin looking for a clinical trial, you must know certain details about your cancer diagnosis. You will need to compare these details with the eligibility criteria of any trial in which you are interested. Eligibility criteria are the guidelines for who can and cannot participate in a particular study.
To help you gather the details of your diagnosis so you will know which trials you may be eligible to join, complete the Diagnosis Checklist. The form asks questions about your diagnosis and provides room to write down your answers. Keep this form with you during your search for a clinical trial.
To get the information you need for the form:
- Ask a nurse or social worker at your doctor's office for help. Explain to them that you are interested in looking for a clinical trial that may benefit you and that you need these details before starting to look. They will be able to review your medical records and help you fill out the form.
Searching for a Trial:
Steps 4-6
You have learned what clinical trials are and how they work, talked with your doctor about your interest in clinical trials, and prepared a checklist of key details about your diagnosis. You are now ready to search for clinical trials.
This section will help you to
- find and search trustworthy lists of ongoing clinical trials
- compare your Diagnosis Checklist with a trial's eligibility criteria, as provided in the trial's description (also called a protocol summary)
- identify those trials that might be good options for you
NOTE: It is important to understand the possible biases and limitations of any clinical trials Web site. To learn more, see How To Evaluate Health Information on the Internet: Questions and Answers.
Searching for a Trial: Step 4
Search the PDQ® Clinical Trials Database
There are many nonprofit and for-profit resources in the United States that offer lists of cancer clinical trials. Unfortunately, no single list is complete. Clinical trials are run by many different organizations, so it is hard to collect information about all of them in one place.
However, the majority of trials listed in most resources are obtained from the Physician Data Query (PDQ) clinical trials database, which is maintained by the U.S. National Cancer Institute (NCI).
The NCI is the U.S. government's chief agency for cancer research and is part of the National Institutes of Health. The PDQ clinical trials database contains a list of more than 2,000 cancer clinical trials worldwide.
NOTE: The U.S. National Library of Medicine maintains a database called ClinicalTrials.gov that includes trials for many diseases and conditions, including cancer. The PDQ and ClinicalTrials.gov databases contain the same cancer treatment trial listings. The main difference is in how information is searched and displayed. You may prefer one way over another.
Important: Get a Copy of the Protocol Summary
Steps 4 and 5 describe where to look for cancer clinical trials. Whichever resource you use, be sure to
- get a copy of the protocol summary for each trial you are interested in
What is a protocol? It is the action plan for the trial. The protocol explains what will be done in the trial, how, and why. The protocol should also list the location(s) where the trial will enroll participants.
Both PDQ and ClinicalTrials.gov (Step 4) provide detailed summaries of the official protocols for each trial listed on their Web sites. Other resources (Step 5) may or may not provide protocol summaries.
How to Search PDQ
Search PDQ by telephone
Make a free telephone call - in English or Spanish - within the United States to the National Cancer Institute's Cancer Information Service (CIS) at 1-800-4-CANCER (1-800-422-6237). All calls to the CIS are strictly confidential.
When you call the CIS, be ready with the details of your Diagnosis Checklist from Step 3.
The CIS is staffed with understanding and knowledgable information specialists who will search PDQ for you. They can send you the search results and protocol summaries by e-mail, fax, or regular mail. The CIS can also provide you with reliable information about your type of cancer and the current standard therapy for treating it.
Search PDQ through the NCI Web site
You can look for trials yourself using a PDQ search form on the NCI Web site. Remember to print out the protocol summaries for each trial you may be interested in.
The basic search form allows you to search by type of cancer, stage or subtype of cancer, and location of trial (ZIP code).
The advanced search form lets you create your search using more detailed information, such as the hospital or institution involved, type of treatment, and phase of trial.
If you would like help searching PDQ while you're online, consider using LiveHelp. Through LiveHelp, you can communicate confidentially and in real time with a CIS information specialist from the National Cancer Institute. The service is available Monday through Friday from 9:00 a.m. to 11:00 p.m. Eastern time.
Searching for a Trial: Step 5
Search Other Resources
While PDQ and ClinicalTrials.gov have the most complete listing of cancer trials, you might want to check a few other resources, as well. Why? Because
- some may include a few trials not found in the federal databases
- you may prefer their way of assisting you in your search
The other resources discussed in this section are
- TrialCheck®
- Third-Party Clinical Trial Web Sites
- Industry-Sponsored Cancer Trials
- Cancer Advocacy Groups
- Fee-Based Search Services
Note: Links to external Web sites are provided for convenience and informational purposes only. The inclusion of these links does not constitute an endorsement by the National Cancer Institute. See the full Disclaimer of Endorsement and Liability policy for the NCI Web site.
TrialCheck
TrialCheck is operated and maintained by the Coalition of National Cancer Cooperative Groups (CNCCG). The CNCCG is made up of groups of doctors and other health professionals that carry out many of the large cancer clinical trials in the United States funded by the National Cancer Institute.
TrialCheck includes fewer trials than either PDQ or ClinicalTrials.gov - the two government databases described in Step 4.
However, because TrialCheck helps you search its list through an online form that “interviews” you about your cancer and the kind of treatment(s) you have received, you might prefer this kind of service.
How to search TrialCheck
Third-Party Clinical Trial Web Sites
There are a number of clinical trial Web sites that are not operated by funders, sponsors, or the organizations carrying out the trials. Some of these Web sites are operated by private companies - these may be funded through fees that industry sponsors pay to have their trials listed or according to how many participants the Web site refers to them.
Keep the following points in mind:
- Most third-party clinical trials Web sites list or link to trials in PDQ or ClinicalTrials.gov.
- They may include a few more trials than you'll find in the federal databases, but they may also include fewer.
- Unlike the federal databases, these sites may not regularly update their content or links.
- Unlike the federal databases, these sites might require you to register to search for trials or to obtain contact information about the trials that interest you.
Links to several third-party Web sites are listed below. Clicking on the links will help you learn more about the sites and what they have to offer in addition to their clinical trial listings.
Industry-Sponsored Cancer Trials
Pharmaceutical and biotechnology companies sponsor many of the cancer clinical trials being carried out in the United States. Some of these trials are listed in the federal databases (PDQ and ClinicalTrials.gov), but many are not.
Federal law requires that U.S. researchers submit to ClinicalTrials.gov all phase II, III, and IV trials of therapies for serious or life-threatening illnesses (including cancer) conducted as part of the approval process overseen by the U.S. Food and Drug Administration. However, this law is difficult to enforce and for business reasons, some drug companies have preferred to keep details about their clinical trials from the public.
How to search for industry-sponsored trials
- If you are aware of an experimental cancer treatment and know the company that manufactures it, search the Internet to find the Web site of the company. Find the company's customer service telephone number. When you call, ask to speak to the company's clinical trials department. Tell them you are looking for a trial that you might be eligible to join.
Cancer Advocacy Groups
Cancer advocacy groups work on behalf of people diagnosed with cancer and their loved ones. They provide education, support, financial assistance, and advocacy to help patients and families who are dealing with cancer. These organizations recognize that clinical trials are important to the cancer treatment process and, thus, work to educate and empower people to find information and access to treatment.
Because they work hard to know about the latest research advances in cancer treatment, these groups will sometimes have information about certain key government-sponsored trials, as well as some potentially significant trials sponsored by pharmaceutical companies or cancer care centers.
How to search for trials through a cancer advocacy group
- Contact the advocacy group for the type of cancer you are interested in and ask what they can tell you about ongoing clinical trials. The nonprofit Marti Nelson Cancer Foundation maintains a partial list of such groups on its CancerActionNow.org Web site.
Fee-Based Private Search Services
A number of private services will, for a fee, locate clinical trials for you. While having someone search for you may ease your stress, it is important to keep in mind that several of the resources mentioned earlier in this guide provide elements of this kind of service for free. Also, be sure to ask the following questions:
- What list or lists of clinical trials does the service search? Are those lists likely to provide you with an unbiased and largely complete source of options?
- Does the service receive any money for directing patients to certain trials or for including certain trials in their list?
Searching for a Trial: Step 6
Make a List of Potential Trials
At this point you have created a Diagnosis Checklist, identified one or more trials you might be interested in, and obtained a protocol summary for each one.
This section will help you
- take a closer look at the protocol summaries
- narrow your list to those trials you would like to get more information about
Now it's time to take a closer look at the protocol summaries you have obtained for the trials you're interested in. You should remove from your list those trials you aren't actually able to join and come up with one or more top possibilities.
What follows are some key questions to consider about each trial. However, don't worry if you cannot answer all of these questions just yet. The idea is to narrow the list if you can, but don't give up on one that you're not sure of.
Note: Ideally, you should consult your doctor during this process, especially if you find the protocol summaries difficult to understand. But you can probably do Step 6 yourself if the protocol summary is relatively complete and easy to understand.
- Trial objective. What is the main purpose of the trial? Is it to improve your chances of a cure? To slow the rate at which your cancer may grow or return? To lessen the severity of treatment side effects? To establish whether a new treatment is safe and well tolerated? Read this information carefully to learn whether the trial's main objective matches your goals for treatment.
- Eligibility criteria. Do your diagnosis and current overall state of health match the eligibility criteria (sometimes referred to as enrollment or entry criteria)? This may tell you whether you could qualify for the trial. If you're not sure, keep the trial on your list for now.
- Trial location. Is the location of the clinical trial manageable for you? Some trials are available at more than one site. Look carefully at how often you will need to receive treatment during the course of the trial, and decide how far and how often you are willing to travel. You will also need to ask if the sponsoring organization will provide for some or all of your travel expenses.
- Study duration. How long will the study run? Not all protocol summaries list this information. If they do, consider the time commitment and whether it will work for you and your family.
If, after considering these questions, you are still interested in one or more of the clinical trials you have found, then you are ready for Step 7.
Source: http://www.cancer.gov/clinicaltrials/finding/treatment-trial-guide
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