Germ Cell Tumor Epidemiology Study (GaMETES)

Researcher in charge of the study

Jenny Poynter , PhD, MPH
University of Minnesota Division of Epidemiology/Clinical Research 
Department of Pediatrics
420 Delaware St. SE MMC 715 
Minneapolis, MN 55455

What is the GaMETES Study?

The GaMETES (Germ Cell Tumor Epidemiology Study) was designed to try to find out more about risk factors associated with germ cell tumors in children. The main purpose of this study is to understand how genes might affect young people's chances of developing a germ cell tumor (GCT). To do this we will compare the genes of young people with a GCT to the genes of their parents or full siblings. We will also look at how some lifestyle factors work with genes in germ cell tumors. Lastly, if available, we will collect a small part of the leftover tumor sample.

Who is eligible for this study?

Families are eligible for this study if:

  1. The child was diagnosed with malignant germ cell tumor after July 1, 2008.
  2. The child was less that 20 years of age when the germ cell tumor was diagnosed .
  3. At least one biological parent is alive and willing to participate.
  4. They can comprehend written English or Spanish.
  5. The child was registered with the Children's Oncology Group and enrolled on ACCRN07.

How does this study work?

If a family participates, we will ask for three things:

  • We will collect some cheek cells from the young person and his/her parents (or a sibling) to look at DNA.
  • We will ask the biological mother and father fill out surveys.
  • If there is left over tumor sample, we will ask for a small portion of it from the Children's Oncology Group tumor bank.

Information for GaMETES Study participants:

This research will not help you or your family, but it might help us understand why young people get germ cell tumors. Because we don't know what this research might mean for you, we will not give the results of your individual DNA tests to you or your doctor. We will be happy to give you the results of the whole study when it's over.

Why is this study being done?

This study is being done to learn more about germ cell tumors and is being conducted by Jenny Poynter , Ph.D., M.P.H. at the University of Minnesota. The participants include:

  • Young people who have been diagnosed with a germ cell tumor
  • Parents of young people who have been diagnosed with a germ cell tumor
  • Brothers or sisters of young people with a germ cell tumor (if one parent cannot participate and the sibling shares the same mother and father)

Germ cells are reproductive cells that develop into sperm in males and eggs in females. Sometimes germ cells do not develop as they should and an abnormal growth can occur in the testicle or ovary, or in germ cells that have traveled to other areas of the body (such as the chest, abdomen, tailbone or brain). Germ cell tumors can be benign or malignant.

This is an epidemiologic study, which means that the researchers are gathering information from a lot of families in order to find patterns between potential risk factors they have been exposed to and germ cell tumors. It is known that some environmental factors, such as toxic chemicals, can cause disease. There are some genetic factors in people which can make it more likely for themselves or their children to develop tumors. Some tumors are caused by a combination of factors, including the environment and genetics.

In this study, both environmental and genetic risk factors are being looked at. Biological parents of young people diagnosed with germ cell tumors are asked to fill out a questionnaire and provide a sample of cheek cells. If one parent is not available to give a cheek cell sample, another son or daughter can instead.

The DNA from cheek cells may help us discover what genes might be involved in the development of germ cell tumors. Carefully determined questions will ask parents for information related to medical history, family health history, jobs, and their child's health. It must be emphasized that the significance of many of the questions we will ask is entirely unknown. Only by asking questions such as these can we learn whether any of these factors are important in the development of germ cell tumors.

DNA: Description, collection, storage, and future use

DNA—what is it? DNA is the genetic material in a person's cells that makes them unique. There are thousands of genes in each cheek cell which are made up of DNA. By studying DNA, scientists can discover what genes might cause young people to get germ cell tumors.

DNA—collection: The way we collect DNA from you is to have you spit into a sample collection cup that we will provide.

DNA—storage and future use: We will keep this DNA at our lab for a very long time in case there are things that we want to look at in the future that we haven't thought of yet. You can ask to have your DNA sample destroyed if you want to until 2019. After that we will not have your name and won't be able to tell which DNA sample is yours. If you turn 18 before 2019 we will contact you to ask if we may continue to keep your DNA sample at our lab.

What are the benefits of participating in the GaMETES Study?

There will be no direct benefit to you or your family. This research may help us understand why young people get germ cell tumors.

Can I receive the study results?

Yes. Group results will be available a few years after the study is completed. When a member of the study staff calls, let her know that you would like to receive the study results.

When will the study results be available?

We expect to report the results of this study within a few years after the study is completed. No individual would ever be identified; all data are coded by identification numbers and only group results are presented.

How can I participate?

Contact our research team at 1-866-434-9879.

Sponsor: National Institutes of Health/National Cancer Institute

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