Frequently Asked Questions

If you think you should be in this study, call our toll-free number at 1-800-775-2167 or email us at LTFU@stjude.org. We’ll be glad to help you confirm that!

If you were ever part of the study in the past, you will continue to be a study participant until you tell us in writing that you no longer want to participate. Even if you have skipped some of the surveys, your health information is still very important. We need and value you!

We hope you will confirm and update your contact information online. You can also call our toll-free number at 1-800-775-2167 or email us at LTFU@stjude.org to make sure we have your correct contact information and find out when you might expect to receive your next survey.

Newsletter are sent out three times a year. Surveys are conducted every few years. You will continue to be an important part of the study, and will receive newsletters and surveys, until you tell us that want to withdraw.

If we lose touch with a participant, it’s usually because we don’t have the right contact information.  Please confirm and update your contact information online. You can also call our toll-free number at 1-800-775-2167 or email us at LTFU@stjude.org to make sure we have your correct contact information and find out when to expect to receive your next survey or newsletter.

Yes! Participants enrolled in the study represent a sample of all the survivors of childhood cancer, and everyone who is part of the study is important for its success. While some survivors will be healthy, others may develop complications from either their disease or treatment. The results of the study will not be accurate if only those survivors who have problems continue to participate.  Having a better understanding of who is at risk for developing problems will help develop new treatment strategies and increase what we know about how to protect survivors’ health.

Yes! It is by combining all the information provided by participants in the Long-Term Follow-Up Study 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 be higher.

Yes! Siblings of childhood cancer survivors are a comparison group. For example, 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 that does not have a past history of childhood cancer or exposure to chemotherapy or radiation therapy. Continued sibling participation is very valuable.

Protecting your health information is our top priority but 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. Learn more about how we protect your privacy and safety.

While our goal is to make your survey as easy to complete as possible, we understand that sometimes a question may feel too personal or might bring up difficult feelings. Your response to every question is important. You have the option to skip any question that makes you uncomfortable, but here are some things to consider:

• Your answers help improve survivors’ lives. We only include questions that we believe can make a difference in people’s lives—for example, lead to new treatments or programs to promote the health of survivors. Your answers add to what we know and what we can do.
• We are committed to your privacy. Every person in the study has been assigned a unique study number. When your survey responses are collected, your name and any information that could be used to identify you are removed. All of your information is confidential. The researchers involved in the study cannot disclose a participant’s identity for any reason.

• Long-Term Follow-Up Study (LTFU) is the name we use when communicating about the study with participants, while Childhood Cancer Survivor Study (CCSS) is the scientific name used by researchers and the medical community. “Long-Term Follow-Up Study” emphasizes what the study is about without disclosing that some participants may be survivors of childhood cancer, thus protecting their personal health information.
• You may hear about the Childhood Cancer Survivor Study or CCSS when important new findings are reported in the news. We want you to take pride in the attention the study receives, because your dedication contributes to every advance we make in protecting the health of survivors.