Frequently Asked Questions

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NCI started the Retinoblastoma Follow-up Study in 1984 because we wanted to learn if survivors are at risk of developing second cancers as they grow older, especially if they received radiation therapy to treat their retinoblastoma.

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The information you provide about your health adds to the general knowledge about retinoblastoma. Our study group hopes to learn more about the types of cancers that survivors are at risk of developing. Our goal is to follow retinoblastoma survivors over their lifetime. Our research provides important information on what survivors can expect as they grow older and why they may develop other health problems. Our research would not be possible without your continued participation and cooperation. We appreciate your willingness to provide information about your current health.

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We believe the genetic cause of hereditary retinoblastoma is partly responsible for the increased risk for new cancers. The inherited genetic mutation in the RB1 gene that causes retinoblastoma is also known to play a role in the development of other cancers. These include cancers of the bone (osteosarcomas) and soft tissue (sarcomas), as well as lung, breast and bladder cancer in adults.

The radiation used to treat hereditary retinoblastoma may also contribute to risk. Medical ionizing radiation is known to increase risk of cancer. Our study seeks to better understand the interaction between the gene and radiotherapy. Despite these known risks, radiation is often the best treatment available to preserve vision in patients with retinoblastoma in both eyes.

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We keep the information you give us confidential. The study has a Certificate of Confidentiality, which protects researchers and/or institutions from being compelled to disclose any information that would identify study participants, thereby protecting the privacy of research participants. The researchers involved in this study have pledged to keep all information confidential. We report the research results from this study only in the form of statistics. Therefore, no one can identify any participant. For more information on Certificates of Confidentiality, please visit https://grants.nih.gov/policy/humansubjects/coc.htm.

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You should consult with your healthcare provider or a genetic counselor about your decision to seek genetic testing. Although we study genes in our research, we do not conduct clinical genetic testing. Several hospitals in the U.S. and Canada conduct this type of testing. A good source for these professionals is the NCI Cancer Genetics Services Directory.

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