1. This research study has been funded by the National Cancer Institute since 1994. The study originated at the University of Minnesota and is now led by researchers at St. Jude Children’s Research Hospital along with over 30 partner hospitals in the U.S. and Canada. The purpose of this study is to learn about the health and social effects of a childhood illness such as cancer, leukemia or a tumor. The information we collect is used to make recommendations for the treatment and follow-up of children who are diagnosed with a serious illness. We also help current survivors learn more about health risks they may face as adults.

  2. About 25,000 people from the United States and Canada who were treated as children for cancer or a similar illness are participating in this study. Additionally, over 5,000 of their siblings (brothers and sisters) who did not have a serious illness as a child are participating.

  3. You will answer questions about your health. You may leave blank any questions you are uncomfortable answering.  The questionnaire can be completed using a paper form, online or over the phone with a trained interviewer. You may also be asked to provide a DNA sample such as saliva, but this is optional.

  4. No. Participation is voluntary and so are the study questionnaires.

  5. Protecting your health information is our top priority. Still, there is a small chance personal information from your records could be accidentally seen by others. To prevent this from happening, electronic data is stored on password protected computers; only study team members work with the data; and study results are reported on the whole group, never identifying one individual.

  6. We will send you a study newsletter with important health information every four months. Also, the information we collect may help us make recommendations for the treatment and follow-up of children diagnosed with cancer or a similar illness in the future. You may also be invited to participate in LTFU studies that are targeted to improve your health.

  7. Participants enrolled in the study represent a sample of all the survivors of childhood cancer. While some survivors will be healthy, others develop complications from either their disease or treatment. Having a better understanding of who is at risk for developing problems will aid in identifying new treatment strategies. All participants who enrolled in the study are encouraged to continue. The results of the study will not be accurate if only those survivors who have problems continue to participate.

  8. Yes. The information you provide in the health update surveys is very useful for the same reason mentioned in the question above.

  9. Yes. The LTFU study welcomes you back. If you think you were in this study and want to find out, call our toll-free number at 1-800-775-2167 or email us at LTFU@stjude.org.

  10. Yes. It is sometimes difficult to relate some of the treatment given for a childhood cancer with a problem that develops in adulthood. It is by combining all the information provided by LTFU participants that investigators are able to make the connection between certain conditions and disease or treatment for cancer. For example, when an individual has a family history of heart disease, other family members may be at risk of heart disease. But, when coupled with the knowledge that an individual received one of the anthracycline drugs as part of their treatment, their risk of heart disease may even be higher.

  11. The information you provide is held in the strictest confidence. Every person in the study has been assigned a unique LTFU study number, and when you submit a survey or biologic specimen, your name and other personal identifiers are removed from the information you give us. A limited number of study personnel have access to your information. There are several steps that need to be done to link the names and the IDs to your personal information. No data are ever stored on laptops, and only authorized individuals have access to the data. The study has received a Certificate of Confidentiality, a document which will help us protect the privacy of our research subjects. The Certificate protects against the involuntary release of information about subjects collected during the course of our covered studies. The researchers involved in the studies cannot be forced to disclose the identity or any information collected in the study in any legal proceedings at the federal, state or local level, regardless of whether they are criminal, administrative or legislative proceedings. Federal funding agencies may review our records under limited circumstances, such as a DHHS request for information for an audit or program evaluation or an FDA request under the Food, Drug and Cosmetics Act.

  12. Many people in the LTFU are hesitant to provide answers to questions regarding income and wonder what income has to do with their past history of childhood cancer. First, be assured, the information you provide is held in strict confidence. When results of the study are presented, the data is grouped. No individual is ever identified. A report, for example, might say that 10% of the LTFU population has a household income of less than $10,000, not that John Smith earns less than $10,000. The information is useful in identifying some of the financial burdens some survivors experience which might impact their ability to get health care services.

  13. The direct benefits of participating in the LTFU may be limited. But, there are several indirect benefits. First, you are partners with the researchers in describing late effects in the largest epidemiologic investigation of survivors of childhood cancer. The information you provide contributes to our understanding of the health needs of survivors that previously may have gone unrecognized. You have a chance to take part in additional studies designed to learn more about the effects of changing behaviors to promote a healthier lifestyle and reduce the risk of disease. The experiences you describe in health surveys help improve the treatment and outcome for future children diagnosed with cancer or other serious illness. Finally, participants also receive newsletters designed to educate survivors about the potential impacts of a cancer diagnosis and treatment on their health and present resources that specifically address survivor needs.

  14. Many siblings are confused about why they are participants in a study of the late effects of childhood cancer survivors. If investigators were interested in determining if there is a higher risk of a second cancer among childhood cancer survivors, they would need to compare that number to another group that is similar but without a past history of childhood cancer or exposure to chemotherapy or radiation therapy. Siblings of childhood cancer survivors are that comparison group. They shared many of the same environmental exposures as their sibling with cancer with the exception of chemotherapy and radiation. Continued sibling participation is very valuable.

  15. Call the study team toll free at 1-800-775-2167 or send us an email at LTFU@stjude.org.