Information for Participants

As an LTFU Study participant, you are a partner in historic research. The LTFU Study is unique — it's the largest study of its kind. The information you provide contributes to our understanding of the health needs of survivors.

The National Cancer Institute describes the LTFU Study as "one of the most powerful NCI-supported research efforts for tracking the needs and health of survivors."

With your help, we've been able to learn a lot. But many questions are still unanswered. If you have not completed a health update survey in the last 1-3 years, please contact us.

The difference you make

Improving the lives of others: Health information from participants in the Long-Term Follow-Up Study helps doctors develop new treatments for children with cancer or other serious illnesses. Improving childhood cancer treatments can help prevent survivors from developing health problems later in life that may be a result of either the disease or its treatment.

Increasing understanding of your own health: The information you provide when you complete the study’s surveys also adds to what we know about how being treated for cancer may affect the health of cancer survivors during later stages of their lives. This knowledge helps survivors and their health care providers by alerting them to possible risks, increasing awareness about screening and early detection of health issues, and adopting effective preventive strategies.

Catch up on the LTFU Study research results or read our newsletters to learn more about some of the study’s achievements that you have helped to make possible.

Benefits for you

Many participants report that the most important benefit of being part of the Long-Term Follow-Up Study is the pride they feel in being part of the study, and knowing they are helping to improve the lives of future generations. Others mention that they are glad to have a way to "give back" to science and medicine.

In addition to knowing you are making a difference in the lives of survivors today and for generations to come, benefits include:

  • Opportunities to take part in additional studies focused on protecting and promoting survivors' health
  • Newsletters (three each year) with the latest, most accurate information about health issues that may affect or concern survivors of cancer diagnosis and treatment, and useful resources

What participants do

As a participant, you are asked to complete health surveys that you will receive every few years. You can choose the way to respond that is easiest for you from these options.

You don’t need to answer any questions that make you feel uncomfortable. Here are answers to some common questions about the surveys.