Childhood cancer patients enter clinical trials more often than do adult cancer patients. A child diagnosed with cancer is usually referred to a major treatment facility, such as a Children’s Hospital, because childhood cancer is rare and is best treated by the specialists at these facilities. These pediatric oncology specialists are often members of Children’s Oncology Group (COG). COG sponsors clinical trials for most childhood cancers. St Jude Children’s Research Hospital, Dana Farber Cancer Center, Duke Comprehensive Cancer Center, and several other institutions also sponsor childhood cancer trials. Pediatric brain tumor clinical trials are offered by members of the Pediatric Brain Tumor Consortium.
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WHERE TO FIND CLINICAL TRIALS
National Cancer Institute: Cancer Trials Search
The cancer.gov web site sponsored by the National Cancer Institute. Use the search form to find a trial for a particular cancer. You can use the basic search or the advanced search function. Each clinical trial is summarized in a patient-orientated version as well as an often quite detailed health professional version.
Note to survivors/Parents of survivors: The advanced search function is a useful way to find information about the trial that you/your child participated in. Use the advanced search function, click the “closed trial” option, and enter in the protocol number. The published results of the trial are included in the PDQ. Review 4/07.
The U.S. National Institutes of Health, through its National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, health care professionals, and members of the public easy access to information on clinical trials for a wide range of diseases and conditions. The database contains 4000 studies at 47,000 sites, mostly government and university sponsored studies. The web site has links to resource information, such as Understanding Clinical Trials, Glossary, Genetics Home Reference, and NIH Health information. Review 4/07.
TrialCheck is a search tool developed by the Coalition of Cancer Cooperative Groups to assist you in locating cancer clinical trials. This search tool uses nine simple questions. After you answer these questions, you will receive a list of cancer clinical trials in which you may be eligible to enroll. Although the majority of the questions are optional, providing as much information as you are able to will allow TrialCheck to eliminate those trials for which you are not eligible. TrialCheck allows you to search for cancer clinical trials according to location so you can find trials close to your home. You also have the ability to save all of your search results. In addition, TrialCheck has the ability to update you via email whenever a new cancer clinical trial has been added to your search results.
M.D. Anderson Pediatric Cancer Clinical Trials
M.D. Anderson offers trials for most childhood cancers. Some of their trials are COG trials, and some are their own. The web site offers a couple ways to easily navigate to information about these trials.
Pediatric Brain Tumor Consortium (PBTC)
The Pediatric Brain Tumor Consortium is an association of researchers and neuro-oncologists from ten institutions. The Consortium sponsors clinical trials for the different types of brain tumors. Follow the above link for more information on the Consortium, the trials that they offer, and links to the individual institutions that offer the trials.
Clinical Trials and Noteworthy Treatments for Brain Tumors
The web site of the Musella Foundation For Brain Tumor Research. The Musella Foundation is a non-profit organization dedicated to improving the quality of life and survival times for brain tumor patients by using computer technology to index brain tumor clinical trials, streamline the flow of information, organize the brain tumor community and raise money for brain tumor research.
Links to Additional Clinical Trials
About Clinical Trials
A cancer treatment clinical trial is an investigative study of a particular treatment plan. It can study new drugs, combinations of drugs and therapies, modes of drug administration, etc. The clinical trial documentation given to all the doctors administering the trial is a detailed protocol so that exactly the same treatment will be given to all of the enrolled patients.
Clinical trials are designated phase I, II, or III. Briefly, phase I trials study new drugs and phase II trials study whether or not a drug is effective against a cancer. Phase III trials study small changes to the current standard of care for a particular cancer to determine if these changes improve the survival rate. Please refer to ACCO newsletter articles, linked to below, for details on the phases of clinical trials. Information on clinical trials is also included in several of the American Childhood Cancer Organization books, on the Ped-Onc Resource Center, and in the clinical trials section of the NCI web site.
Candlelighters’ articles on clinical trials:
- Clinical Trials Part I: Article from the Fall 2002 CCCF Newsletter. Discusses clinical trials in general and the different phases.
- Clinical Trials Part II: Article from the Spring 2003 CCCF Newsletter. Discusses why people enroll in clinical trials, what it takes to do a clinical trial, how they are funded, ethical study design, how they are reviewed and designed, and more.
- Children and Clinical Studies on the National Institutes of Health web site. This article – complete with videos – offers information on the importance of research in kids, enrolling in a study, what to expect while on a study, and more.
Informed consent means that the oncologist has discussed all available treatments, given the family time to discuss all options, discussed the pros and cons of the trial, and clearly described the standard of care versus the experimental arms of the study. All questions should be answered in language that is clearly understood by the parents and child, and there should be no pressure to enroll the child in the study. The objective of the informed consent process is that the participants are comfortable with their choice and can comply with it. The following Candlelighters Newsletter discusses informed consent in detail.
- Informed Consent: Article from the Fall 2003 CCCF Newsletter.