About the Long-Term Follow-Up Study

For more than 23 years, the Long-Term Follow-Up (LTFU) Study has collected information from thousands of survivors and their siblings to find out about the long-term effects of treatment for a serious illness.  Thanks to our participants’ commitment, researchers have been able to make recommendations to help survivors live healthier lives, and to help improve the care of children who are now ill. 

A unique and important study

The purpose of the LTFU 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 from dedicated study participants guides the development of new recommendations for the treatment and follow-up of children who are diagnosed with a serious illness.

The study’s findings also help alert current survivors and their health care providers with health issues they may develop as adults, and identify ways to protect and promote their health.

The importance of the study is recognized internationally. It is one of the largest epidemiological investigations of late effects outcomes, and the longest-running research project of its kind in the world.

The Long-Term Follow-Up 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 30 additional partner hospitals in the US and Canada.

Study participants

Nearly 25,000 people from the United States and Canada who were treated as children for cancer or a similar illness currently participate in this study. More than 5,000 of their siblings (brothers and sisters) who did not have a serious illness as a child also participate, serving as a comparison group.

Participants are individuals who were diagnosed with cancer between 1970 and 1999, before reaching the age of 21. Each participant has been recruited through one of the 31 participating clinical research centers, where he or she was diagnosed and/or treated. Study criteria require that all participants must have survived at least five years from their initial diagnosis with cancer; this means that individuals who survived five years and subsequently died are included in the cohort.

When a participant becomes part of the study, he or she completes a baseline questionnaire that collects basic demographic and health-related information. For participants under age 18 at baseline, the questionnaire is completed by a parent or guardian. Follow-up questionnaires are mailed to participants approximately every few years to update baseline data and to gather additional information on questions of interest.

In addition to completing the baseline questionnaire, survivors agreed to release medical records of their cancer treatment. The study’s 31 participating clinical research centers, where participants were diagnosed and/or treated, provide detailed abstracts of treatment records for participants recruited from their site. Treatment information includes cumulative dose-specific exposure to chemotherapy, surgical procedures, and radiation therapy. The latter is evaluated by the radiation physics center at M.D. Anderson Cancer Center.