FAQs

Questions?

We’re glad you asked.

Here are some of the most common questions asked by participants. If you don’t find your answer here, please call the study team toll free at 1-800-775-2167 or send us an email at LTFU@stjude.org. We are always happy to hear from you. 

  1. 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!

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.