Survival outcomes data show an estimate of the percent of people with a certain disease who survive for a specific amount of time. The data may measure time from diagnosis or from receiving a specific treatment. Clinical studies can also report other responses to treatment, such as side effects or quality of life. This Web page focuses on survival outcomes data, also called survival rates or survival statistics.
Choosing how much you want to know
There is a lot of information about your disease available from your doctor and other sources. You can choose which information is helpful to you as you talk with your doctor about your disease and treatment options. Some people find survival outcomes data helpful and some do not.
If you want to know about outcomes data for your disease, it is important to talk about the data with your doctor. Your doctor can help you understand how the data apply to you.
How you and your doctor can use outcomes data
Prognosis
Outcomes data can help you and your doctor understand your prognosis. A prognosis is an idea of the likely course of your disease. Your doctor can estimate what might happen to you based on the experiences of others with your disease, as well as your age, overall health, disease status and previous treatments. However, it is important to understand that even your doctor cannot know for certain how your disease and body will respond to treatment.
Treatment planning
Outcomes data can be helpful in making treatment choices. The data can show how other people with a similar disease responded to different treatments. If many people responded well to one treatment while few people responded to another, this information may help you make a treatment choice.
What outcomes data cannot tell you
Outcomes data cannot tell how any one person will do. The data can only report what may happen based on the experiences of other patients. No two people are exactly alike and people's responses to treatment can vary greatly.
Survival data alone cannot tell you about treatment side effects or complications. Two treatments with similar survival rates may have very different side effects. You may also want to know about the quality of life for long-term survivors, such as whether they have long-term complications. It is important to discuss all your treatment options with your doctor so you can understand both the expected benefits and the risks of side effects and complications.
Looking beyond the numbers
When you look at survival outcomes data, it can help to keep several factors in mind.
Patient and donor factors
- Patient factors, such as specific diagnosis, disease status, age, overall health, previous treatments and other risk factors, will affect outcomes.
- Outcomes for bone marrow or cord blood transplants can be affected by the level of matching between a patient and donor.
Number of patients included
This website provides transplant outcomes data from the National Marrow Donor Program® (NMDP), which operates Be The Match®, and the Center for International Blood and Marrow Transplant Research® (CIBMTR).*
- NMDP and CIBMTR data come from many transplant centers and include a variety of patients and treatment plans. This can make it harder to know how well the data apply to your specific situation.
- Outcomes data that include larger numbers of patients can give a more accurate prediction of likely outcomes for other patients.
- The fewer the patients in the data, the less accurate the prediction of likely outcomes for others.
*The NMDP and its research arm, the CIBMTR, collect and study data on transplant patients' results. The goal is to learn how to improve transplants.
When the patients were treated
- Treatments can change over time. Data for patients treated five years ago may not give a good picture of what patients can expect today.
- Long-term survival rates are not yet available for the newest treatments. To learn the 5-year survival rate for a specific treatment, at least five years must pass after the first patients receive the treatment.
Kinds of outcomes reported
- Overall survival tells how many patients are alive at a certain point in time. Some of these patients may be in relapse or may still be receiving treatment.
- Disease-free survival tells how many patients are alive without relapse or signs of disease.
- Progression-free survival tells how many patients are alive with disease that has not gotten worse. For some diseases, people can have a good quality of life if the disease is kept stable, even if it is not cured.
Talk to your doctor
It is a good idea to ask your doctor for help interpreting any survival outcomes data you find. Your doctor can talk with you about factors that may affect the data and discuss how the data may apply to your specific situation.