Search for Legal Help. Search for Clinical Trials.
This section will help your search for legal advice about malignant mesothelioma. In addition, we have provided information to see if you qualify for clinical trials. To proceed with our services for legal advice, fill out the form below so we may contact you. For information on clinical trials follow the instructions provided in the second half of this page.
Seek Legal Advice Related to Malignant Mesothelioma
Seek Clinical Trial Participation Information
See if you qualify for a clinical trial.
To help search for a clinical trial that is right for you, get started by filling out this Diagnosis Checklist, print it out and save it for your records.
Diagnosis Checklist
Fill out this Diagnosis Checklist before you start looking for a clinical trial. The checklist will help you know which clinical trials you are eligible to join.
See Step 3 for details about how to obtain the information you need for the checklist.
TIP: Download the PDF version of this guide and save it to your own computer. Then you can print it out and fill in the answers to these questions to keep for later use.
1. What kind of cancer do you have? Write down the full medical name.
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2. Where did the cancer first start? Many cancers spread to the bones, liver, or elsewhere. However, the type of cancer you have is determined by where it first showed up. For example, breast cancer that spreads to the bone is still breast cancer.
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3. What is the cancer's cell type? This information will be in your pathology report.
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4. If there's a solid tumor, what size is it?
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5. If there is a solid tumor, where is it located? If the tumor has spread, list all locations.
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6. What stage is the cancer? The stage describes the extent of cancer in the body and whether it has spread from the original site. There are different staging systems for different cancers.
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7. Have you had cancer before, different from the one you have now? If so, answer questions 1-6 for the other cancer, as well.
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8. What is your current performance status? An assessment from your doctor indicating how well you are able to perform ordinary tasks and carry out daily activities.
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9. If you have not yet had any treatment for cancer, what treatment(s) have been recommended to you?
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10. If you have had treatment for cancer, please list (for example: type of surgery; chemotherapy, immunotherapy, or radiation).
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11. Bone marrow function (blood tests that check whether your blood count is normal):
- A. White blood cell count
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- B. Platelet count
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- C. Hemoglobin/hematocrit
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12. Liver function (blood tests that check whether your liver function is normal):
13. Renal function (blood test that checks whether your kidney function is normal):
Serum creatinine
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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.
After Finding a Trial: Steps 7-10
Now that you have found one or more clinical trials for which you think you are eligible and that may be a good treatment option for you, it is time to make a telephone call to each trial's contact person so you can ask a few more crucial questions. Then, you will be ready to make a final treatment decision.
After Finding a Trial: Step 7
Contact the Clinical Trial Team
There are several ways to contact the Clinical Trial Team.
- Contact the trial team directly. The protocol summary should include the name and telephone number of someone you can contact for more information. You do not need to talk to the lead researcher (called the “protocol chair” or “principal investigator”) at this time, even if that is the name that is included with the telephone number. Instead, call the number and ask to speak with the “trial coordinator,” the “referral coordinator,” or the “protocol assistant.” This person can answer questions from potential patients and their doctors. It is also this person’s job to determine whether you are likely to be eligible to join the trial. (A final determination would be made only after you had gone in for a first appointment.)
- Ask your doctor or other health care team member to contact the trial team for you. Because the clinical trial coordinator will ask questions related to your diagnosis, you may want to ask your doctor or someone else on your health care team to contact the clinical trial team for you.
- The trial team may contact you. If you have used some a third-party Web site and identified a trial that interests you, you may have provided your name, phone number, and e-mail address so that the clinical trial team can contact you.
You will need to refer to your Diagnosis Checklist (Step 3) during the conversation, so keep that handy.
After Finding a Trial: Step 8 - Ask Questions About the Trial
Whether you or someone from your health care team calls the clinical trial coordinator, this is the time to get answers to questions that will help you decide whether or not to join this particular clinical trial.
It will be helpful if you can talk about your diagnosis in a manner that is brief and to the point. Before you make the call, rehearse with a family member or friend how you will present the key details of your diagnosis (Diagnosis Checklist). This will make you more comfortable when you are talking with the clinical trial coordinator and will enable you to answer his or her questions smoothly.
TIP: Download the PDF version of this guide and save it to your own computer. Then you can print it out and fill in the answers to these questions to keep for later use.
Source: http://www.cancer.gov/clinicaltrials/finding/treatment-trial-guide
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