Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Clinical Trials

Historically, 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, or COG. COG sponsors clinical trials for most childhood cancers. St Judes, Dana Farber, Duke, and several other institutions also sponsor childhood cancer trials (see below).

Please note: fewer adolescents than young children enroll in clinical trials. See the Teen Cancer Care section.

Clinical trials are one of three types, called "phases", as defined below.

Phase I. Studies brand new drugs. In other words, they really don't know whether or not the drugs will kill people or cancer first. In this phase, they are trying to figure out what doses of drugs or therapies can be given to humans, extrapolating from animal trials.

Phase I studies are true experiments. Laboratory tests have suggested that the new drugs might be effective against cancer, but the researchers do not know if they will help, and the doses that children will tolerate are unknown. Parents often enroll their children in these trials in the hope that a new and untried drug will be effective, but they need to recognize that the chances are low.

Phase II. Studies drugs that graduated from Phase I studies, and the trial is testing if the drug is active against a specific cancer. They try them on a few more people and a few different doses. The drugs probably won't kill the patient.

Phase II trials are sometimes chosen by parents when their child has relapsed. Occasionally, Phase II trials are designed to test an exceptionally promising agent against a tumor for which other effective therapies exist. While the treatments are experimental, there is usually reason to believe that patients enrolled may benefit.

Phase III. Studies the standard protocol - the one most often currently used for a particular type of cancer - with drugs that have graduated from Phase II studies. This doesn't mean that they throw out the whole standard protocol and use the new drugs, it means that they "tweak" the current combination of drugs used by slipping in some new ones and/or changing the doses or combinations of current drugs and/or the length of drug treatment. Often the researchers are trying to maintain survival rates while lowering the toxicity of the treatment.

Where to find clinical trials

Cancer.gov

This link takes you directly to the main search page on cancer.gov. The search interface is straightforward, and the page also offers links to information on clinical trials and offers other help functions.

ClinicalTrials.gov

The U.S. National Institutes of Health, through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies. I like this site because it offers an advanced search with options such as searching for trials that are not yet recruiting, active but not recruiting, or completed; searches for trials with specific treatments; searches by trial sponsor; more.

St. Jude.org

This link takes you to the entry page for St. Jude's patients and family section. Select "Care and Treatment" to get started searching for trials for a specific childhood cancer.

Dana-Farber.org

From this page you can find the open clinical trials for pediatric cancers that are offered by Dana-Farber/Harvard Cancer Center.

MD Anderson

Use this direct link to their trials.

Memorial Sloan-Kettering

Direct link to MSK trials.

Duke Cancer Institute

Link to cancer trials at Duke.

EmergingMed

EmergingMed is a very useful Clinical Trial Navigation Service. It was founded in 2000 to help people find new and better treatments for serious and life threatening medical conditions.

Center Watch

A clinical trials listing service.

VirtualTrials.com

For brain tumor only. This is Al Musella's website. Direct link to clinical trial search page.

Burzynski Clinic

Burzynski is on the borderline between "alternative" and "conventional" treatment for cancer; his trials do have FDA approval. Direct link to clinical trials page.

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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