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What to Expect, Eligibility Information, and How to Participate

What to Expect

Individuals who choose to participate in the CGB familial testicular cancer study will be asked to contribute a blood sample to assist in locating the TGCT1 gene, and to identify new testicular cancer genes. Participants will also be asked to fill out questionnaires involving their personal medical history, their family history, and the impact that of being in a family that has been affected by familial testicular cancer. This study, the "Multidisciplinary Etiologic Study of Familial Testicular Cancer," (NCI Protocol Number 02-C-0178) has been reviewed and approved by the National Cancer Institute's Institutional Review Board (IRB). All information that we collect as part of this program is kept confidential, according to privacy guidelines applicable to NIH studies. A system is in place to insure your privacy and this research information is protected from disclosure by a Certificate of Confidentiality issued by the U.S. Department of Health and Human Services. While we cannot guarantee that this study will develop information that is immediately beneficial to individuals and families who participate in it, we are hopeful that it will lead to important discoveries about testicular cancer and its prevention.

In addition, some of the participants will be invited to the Clinical Center of the National Institutes of Health for more detailed clinical/genetic/laboratory studies designed to identify other factors which may contribute to the development of familial testicular cancer. It is hoped that by increasing knowledge about the causes of testicular cancer, prevention and surveillance strategies will be developed which will be beneficial to future families with an increased risk of developing this cancer.

Because the purposes of the study are to identify the presence and structure of genes involved in the development of testicular cancer, treatment for testicular cancer is not being offered as part of this project. If the need arises, we will discuss treatment options and provide assistance in establishing care with appropriate physicians.

Study Eligibility and How to Participate

For a family to be considered eligible for this study it must have one of the following:

  1. Two or more family members with testicular cancer.
    -OR-
  2. One family member with bilateral testicular cancer (that is, cancer involving both testicles).
    -OR-
  3. One family member who has had testicular cancer and who also has an identical twin brother.

If your family fits this description and you and other family members are interested in contributing to the research on familial testicular cancer, you may call 1-800-518-8474 to speak with our Referral Nurse, Stephanie Steinbart. She can answer your questions and provide further information regarding CGB's Familial Testicular Cancer Project.