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Research and Education on Cancer Treatment Options
Serving Patients, Caregivers and Medical Professionals Since 2001
A. OVERVIEW OF CLINICAL TRIALS AND THE U.S. GOVERNMENT FREE SERVICES
In the context of this web page, “Clinical Trials” means research on new, experimental treatments for various cancers. Some clinical trials offer low-cost or free treatments, although the patients must cover travel and housing expenses. Some patients have no other treatment options. But even if you do, it is often worth keeping up with such research progress, or lack of it. I recommend at least watching new treatments via the clinical trials databases, even if you do not plan to personally participate in such research. Understanding the clinical trials process in the U.S. and elsewhere takes time, but can be useful in multiple, and sometimes surprising ways.
Here are the basics:
- The biggest myth about this type of research is that all of them require participants to risk being placed in the infamous and unknowing “guinea pig” or “sugar pill” group—those patients who may get no treatment. I have personally heard over a hundred cancer patients say these phrases. They believe this is a high risk and thus see no reason to even explore current or recent clinical trials. This misconception can cost you dearly. Please read on to get the big picture.
- Participating in a Stage III clinical trial is better than participating in a Stage I or II trial. Trials begin at Stage I and move to Stage III or IV. Sometimes the trials overlap. Trials generally progress to the next stage when they have achieved their pre-set research goals. This means they have to gather enough data and analyze it to the point where they can answer the specific research question(s) the study was designed to answer. After Stage III or IV studies are complete, the drug company involved (which often funds all or part of the trial) can ask the U.S. Food & Drug Administration to approve the new drug (or treatment) for doctors to prescribe.
- FDA procedure currently requires drug companies to go through all stages of study for new drugs with ONE stated type of cancer as the subject of study. The goal is to use scientific research designs and statistical methods to PROVE that the new drug is safe enough, effective enough (more on this later) and has “reasonable” side effects. “Effective” in this context, generally means that the new drug or treatment must prove that it is more effective than the current “standard of care.” (If you don't fully understand that last phrase in quotes, look it up in a good medical dictionary or encyclopedia online. Knowing what this means is crucial for you to make an informed decision).
- There are several different study designs, but two are particularly important to understand. Some studies are called “single-arm,” where every patient gets the same new treatment. The other common study design is called “randomized,” where only some of participants get the new treatment, some get placebos or other treatments, and patients are randomly assigned to the various treatment groups. Obviously, most patients prefer to know what treatment they are getting, so they prefer single-arm over randomized experimental trials.
- For a more complete and excellent explanation of clinical trials, go to this web page: www.cancer.gov/clinicaltrials/findtrials. This is the where you can search for clinical trials which are funded (in part or fully) by the U.S. government National Institutes of Health.
- If you do not feel fully confident or comfortable searching this online yourself, you have another great option. You can have an expert search this database of clinical trials with a free phone call to 1-800-4CANCER. Someone with special training will answer your questions (including the meaning of medical terms), search this database thoroughly on your behalf, and even mail you a printed copy of all that may be relevant to your situation. (This costs you nothing—your tax dollars at excellent use, in our opinion. Very few folks know this is available to them, so please spread the word).
- It can help you to understand your cancer better — even if you think you understand it 100%.
- It may give you a better relationship with your oncologist by putting you on a more level playing field. If you can bring up cutting-edge studies to your oncologist and ask him/her questions about it, you will become a better-educated patient and have a better ability to communicate with your doctor. Better communication often happen when your doctor takes notice of your ability to understand the complexities of your cancer.
- You may find items missing in your diagnosis or your treatment protocol.
- You may find questions to ask your oncologist that you never thought of and that may affect your treatment options.
- Your oncologist may find it no longer necessary to leave you in the dark on the specifics of your treatment (if he/she is doing that).
- If you have an oncologist who is unwilling to communicate with you, you may find that you need to rethink your “team.”
- Here's the most valuable item that you may find by searching for clinical trials: You may run across information about your disease, diagnosis, or method of treatment that will cause you to learn that you need a second or third opinion.
B. OTHER ONLINE SOURCES ON CLINICAL TRIALS
As of February 2007, we are thrilled to offer these new links and information from the magazine CURE TODAY, Special Issue, Vol. 6, No. 1, 2007 (www.curetoday.com).
The magazine has 3 pages (45-47) with a good overview of why and how to better understand clinical trials. It is titled, “Clinical Trials: What you need to know to decide if a clinical trial is right for you”. They make this interesting comment, “Unfortunately, no single resource lists every clinical trial.” That is one of the reasons we created this Your Cancer Source web site. By combining our links below with the ones they list on www.curetoday.com/toolbox, the user will find the most complete central resource we know of on clinical trials, both in the US and abroad. (The “toolbox” link will surely continue to grow and be updated, so we recommend it over the magazine version). Please also note our discussion on why it can be useful for patients to follow clinical trial research even if you do not plan to directly participate in one.
- National Cancer Information Center. Call 800-227-2345. This is a call center, always open and staffed with professionals who can answer a wide range of questions, including about clinical trials.
- CenterWatch - Clinical Trials Listing Service
Comprehensive and easy-to-navigate web site covers up-to-date clinical research, a vast database of over 41,000 active industry AND government-sponsored clinical trials. Also new drug therapies in research and those recently approved by the FDA. An open resource for patients as well as research professionals. Posted by physicians conducting research at major medical centers and private research centers. - CenterWatch also offers a Clinical Trial Matching Service through a collaboration with Veritas Medicine. This service enables users to review treatment options and to be actively matched to appropriate clinical trials in the Veritas Medicine database using specific medical and geographic search criteria. The Veritas Medicine database currently includes 1246 clinical trials. In the past month, 26 new clinical trials have been added or updated. To access the Veritas Medicine Clinical Trial Matching Service, click on the link below then select a disease or condition of interest: http://www.veritasmedicine.com/index.cfm?cid=97524
- Acurian is a database of new treatment options. Also learn answers to the following important questions:
What are clinical trials?
Why are clinical trials important?
How are a participant's rights and safety protected?
How can I find out about clinical trials?
What are the phases of the clinical trial process?
What happens after a study is complete?
What are some questions I may want to ask my study doctor?
What are some common terms used in clinical trials and what do they mean?
What Is the Role of the U.S. Food and Drug Administration in Clinical Trials? - The National Cancer Institute's PDQ Clinical Trials Database contains several files, one of which is a list of clinical trials. Trials can be searched by tumor type, treatment type, sponsor type, patient age, and/or location. Both US and international trials are listed. Medical professionals may request professional search assistance (in English or Spanish) by calling the National Cancer Institute's CancerNet Search Service at 800-345-3300 . Patients and families can access this service at 800-422-6237 . This site also gives answers to the questions listed just above.
- Cancer Index
A Guide to Internet Resources for Cancer. This non-profit source offers over 100 pages and more than 4,000 links to cancer-related information. - Cancer Research Portfolio is a one-stop Website for information on cancer research and funding opportunities supported by the National Cancer Institute (NCI) and participating Institutes of the National Institutes of Health (NIH).
- Clinical Trials and Noteworthy Treatments for Brain Tumors
This is a database of both clinical trials and new, conventional treatments for brain tumor patients. The site can be searched by treatment category, state, or tumor type. Also offers access to the Emerging Med database referenced below. - National Cancer Institute of Canada
National Cancer Institute of Canada (NCIC) coordinates Canada's cancer research efforts fpr the past 60 years. Funded by the Canadian Cancer Society and The Terry Fox Foundation, this organization offers clinical trials focused on cancer prevention, detection and treatment. - Coalition of National Cancer Cooperative Groups
CancerTrialsHelp enables visitors to search for clinical trials, register for a monthly electronic newsletter, bookmark favorite sections, and read headlines in cancer news. - EmergingMed
A single, short, secure questionnaire matches patients to enrollment criteria for over 100 brain tumor clinical trials. EmergingMed staff then help patients connect to the right clinical trial coordinators. - Pediatric Brain Tumor Consortium
The PEDIATRIC BRAIN TUMOR CONSORTIUM (PBTC) is a multidisciplinary cooperative research organization devoted to the study of correlative tumor biology and new therapies for primary CNS tumors of childhood. Summarizes open PBTC protocols. - Pharmaceutical Research and Manufacturers Of America
This group represents about 100 US companies involved in pharmaceutical research. The site includes industry information on new drugs. - Stop Cancer
This site focuses on cancer prevention, detection and a focus on alternative/complementary treatments. - Veritas Medicine
Patients are matched to clinical trials based on information submitted confidentially. Supplemented by original information on current and experimental treatments and written by physicians. - Cancer Research and Biostatistics
An interesting group based in Seattle, WA - Clinical Trials “swicki” (meaning a cross between a search engine and Wikipedia community, so this site is constantly updated and “self-improving”)
- You can use Yahoo!, Google, or Copernic to search for many clinical trials, including ones outside the U.S.
C. Cancer Research UK and EU
D. Cancer Research China
E. Cancer Research Japan
- Oxford Journals (UK) occasionally reports on US-Japan clinical trial collaborations:
Clinical Trials for Malignant Lymphoma in Japan
Report of the 1st US-Japan Workshop on Clinical Trials for Further Development of Cancer Therapeutics - Report of interest on trends (as of 2003) on status of clinical trials in Japan, and published by government officials and the Organization for Pharmaceutical Safety and Research, Tokyo)
The Current Status of Clinical Trials in Japan
F. Specific Cancer Types
COLORECTAL
- STOP Colon and Rectal Cancer Foundation
This site focused on the tests and treatment for colorectal cancer, although it offers links for other cancer types as well. Clinical trials specifically for Colon Cancer are listed here.
OVARIAN
- ASSIST-Ovarian web site provides information about clinical trials.
Web Site Updated 4/15/2008
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