Childhood Cancer Survivor Study
The Childhood Cancer Survivor Study (CCSS) is investigating the long-term health effects on people who had cancer when they were children or young adults. It aims to understand how cancer treatments, such as radiation, chemotherapy, or surgery, might impact their health later in life. Researchers are looking at about 50,000 cancer survivors diagnosed between 1970 and 1999, along with 10,000 of their siblings who did not have cancer, to compare their health journeys. The study hopes to learn more about common health problems that might come up years after treatment, how survivors manage their health, and how to improve care for future generations.
At a glance
What is this study about?
This important study, called the Childhood Cancer Survivor Study (CCSS), is all about understanding the long-term health of people who were treated for cancer when they were children or young adults. If you or someone you know had cancer before the age of 21, this research aims to find out how those initial treatments – like chemotherapy, radiation therapy, or surgery – might affect health many years later. This helps doctors learn more about how to best support survivors as they grow older.
The researchers are carefully looking at what happens to the health of approximately 50,000 cancer survivors. To get a clear picture, they are also comparing this information with about 10,000 healthy brothers and sisters of these survivors. This comparison helps them see what health issues might be more common for cancer survivors specifically, rather than just what happens in the general population. They want to understand everything from heart health to fertility and the risk of developing new cancers.
Ultimately, this study's goal is to improve the lives of childhood cancer survivors. By gathering detailed health information and biological samples, the researchers hope to develop better ways to care for survivors, prevent future health problems, and help doctors make kinder treatment choices for children diagnosed with cancer today.
Key takeaways
- Studies the long-term health of childhood cancer survivors.
- Compares survivors' health to that of their healthy siblings.
- Aims to understand the impact of various cancer treatments.
- Involves collecting health information and biological samples.
- Hopes to improve future care for children with cancer.
- Participation is long-term, focusing on health history.
Who may be eligible?
This study is looking for people who were diagnosed with specific types of cancer before their 21st birthday. You would have needed to survive for at least five years after your diagnosis and been treated between 1970 and 1999 at one of the hospitals involved in the study.
There's also a group of healthy brothers and sisters being invited to take part. This group helps the researchers compare the health of cancer survivors to people who haven't had cancer.
If you had certain types of non-cancerous growths or were not living in the U.S. or Canada when you were diagnosed, or if English or Spanish was not your primary language at the time, you wouldn't be able to join this particular study.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- I was diagnosed with cancer before my 21st birthday.
- I survived for at least five years after my cancer diagnosis.
- My cancer was diagnosed between 1970 and 1999.
- I was treated at a hospital involved in this study.
- OR I am a brother or sister of someone who had childhood cancer.
What does participation involve?
This study is mainly about looking back at your health history and collecting information over time. It's not a study where you would receive new medication or experimental treatments. If you are part of the study, you would likely be asked to share information about your health over many years, perhaps through questionnaires or interviews. The study also collects and stores biological samples, like saliva or blood, and sometimes tissue from any second cancers, for future research. This allows scientists to look for links between your genes, your treatments, and your health outcomes. The exact duration of your involvement could be ongoing as the study aims to follow participants long-term.
Potential risks and benefits
Locations (31)
- University of Alabama at Birmingham/Children's of AlabamaVerified postcodeBirmingham, United States· Recruiting
- City of Hope National Medical CenterVerified postcodeDuarte, United States· Recruiting
- Children's Hospital Los AngelesVerified postcodeLos Angeles, United States· Recruiting
- University of California-Los AngelesVerified postcodeLos Angeles, United States· Recruiting
- Children's Hospital of Orange CountyVerified postcodeOrange, United States· Recruiting
- University of California-San FranciscoVerified postcodeSan Francisco, United States· Recruiting
- Stanford University School of MedicineVerified postcodeStanford, United States· Recruiting
- Children's Hospital ColoradoVerified postcodeAurora, United States· Recruiting
- Children's National Medical CenterVerified postcodeWashington D.C., United States· Recruiting
- Emory University/Children's Health Care of AtlantaVerified postcodeAtlanta, United States· Recruiting
- Ana & Robert H. Lurie Children's Hospital of ChicagoVerified postcodeChicago, United States· Recruiting
- University of ChicagoVerified postcodeChicago, United States· Recruiting
Common questions
What will this study specifically look at?
It will examine how different cancer treatments affect long-term health, compare survivors' life expectancy to the general public, and understand their health habits and medical needs.
Why are siblings included in the study?
Siblings who haven't had cancer help researchers compare health outcomes, providing a clearer picture of which issues might be linked to cancer treatment specifically.
Will I need to take any new medication?
No, this study does not involve receiving any new or experimental medications. It focuses on collecting health information and samples over time.
What types of cancer are included?
The study includes survivors of leukaemias, lymphomas, brain tumours, bone tumours, Wilms tumour, neuroblastoma, and soft tissue sarcomas, among others.
Will my personal health information be kept private?
Yes, all your personal health information will be kept confidential and private throughout the study.
How to find out more
Gregory T. Armstrong, MD, MSCE
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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