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About the Long-Term Follow-Up (LTFU) Study

The effects of cancer don’t end with treatment. Often survivors have side effects long after that may impact their ongoing health and wellbeing. By better understanding childhood cancer and its long-term effects, we can help make a difference in the lives of childhood cancer patients and survivors for generations to come.

The LTFU Study follows the health status of survivors and their siblings over time. If survivors in the study have different health outcomes when compared to their brothers and sisters, these results provide strong evidence about how cancer treatments affect long-term health.

The study’s research includes surveys, DNA banking, and programs to help survivors live healthier lives.

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Learning about the effects of childhood cancer

You help us know more about:

  • The needs of survivors
  • The late effects of treatment
  • Who is at risk for having treatment-related problems
  • How to develop treatment strategies that will decrease the risk of late effects
  • How to protect survivors’ health

The LTFU Study is one of the largest and longest-running research projects of its kind in the world.


experiences shared


years of stories documented


partner institutions

A uniquely important study

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

  • Participant benefits

    Participants of the Long-Term Follow-Up Study help improve childhood cancer survivorship through completing surveys.

    Review the benefits
  • Study partners

    Learn more about participating centers in the Long-Term Follow-Up (LTFU) Study, including institutions and investigators.

    See study partners
  • Study updates

    Review recent findings from the Long-term Follow-up study

    Stay up to date
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Study design

This study is designed to follow survivors and some of their siblings throughout their lives. Through a questionnaire completed every few years, combined with health records and biological specimens, we further our understanding of survivor needs. Investigators may know this study as the Childhood Cancer Survivor Study (CCSS).


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