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In this overwhelming time, the best defense is information. Learning about a child’s specific cancer, its treatments and their side effects will help you prepare for the road ahead.

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What do we know about the causes of neuroblastoma?

What do we know about neuroblastoma?

About 700 children are diagnosed with neuroblastoma in the United States each year.
About 8% of cancers in children are neuroblastoma.
Neuroblastoma occurs most frequently in the adrenal gland.
Neuroblastoma is most frequent during the first few years of life; 80% of these cancers occur before age 5. It is the most common cancer in babies under one year old.
Neuroblastoma is rarely seen in adults.Researchers have done some epidemiology studies of neuroblastoma.
Differences by gender and race have been observed, but so far no risk factors (things that make it more likely for children to get neuroblastoma) have been identified.

Only a few risk factors for neuroblastoma are known for sure.

Gender

Boys and girls have similar chances of developing neuroblastoma.

Race

White babies are more likely than African American babies to develop neuroblastoma. However, at older ages, white and African American children have similar chances of developing neuroblastoma.

Why don’t we know more about risk factors for neuroblastoma?

Fewer studies have been done to look for risk factors for neuroblastoma compared to the more common childhood cancers (leukemia and brain tumors). Some of the studies identified what seemed like clues at the time, but they were not confirmed in later studies. Even though one or even several studies may find a link between something and risk of neuroblastoma, there are scientific criteria that must be met before it can be concluded that the something really causes neuroblastoma.

If my child has neuroblastoma will we be asked to participate in research studies?

Researchers in the Children’s Oncology Group (COG) design studies about the causes of neuroblastoma. The National Cancer Institute, which is part of the federal government, must also approve such studies. If there is a research study "open" in COG, and your child is "eligible" you may be asked to participate. It is possible that you may be asked to participate in more than one study.

Whether an individual is eligible for a particular study may depend on age, year of diagnosis, and other information. Researchers usually must limit their study to some of these characteristics to have a scientifically valid study. For example, a study might be restricted to patients diagnosed within certain years so the researchers can locate nearly all eligible families and avoid asking parents to recall events too far in the past. Researchers must follow exactly the same restrictions throughout the study.

Researchers investigating the causes of neuroblastoma usually will interview one or both parents by telephone. During the interview, parents are asked questions about their experiences and those of their child. The purpose of the interview is to gather information on things that may or may not influence the risk of cancer. The researchers don’t know whether these things influence risk. They are asking the questions to find out more. Sometimes, the researcher will ask for a small biological sample from you and your child, usually cheek cells, blood or hair. Researchers may also ask for samples of dust or water from your home. The researchers use the information from the interviews and the samples to study whether genes or exposures such as medications, radon, and chemicals alone or together make some people more likely to develop cancer.

Will I find out the results of research that my child and/or I participate in?

The type of information you will receive about the results will be explained to you when you are asked to participate in the study. The overall results of the research study will be published to inform the public and other researchers. No study will publish any information that identifies an individual.