Doctors and researchers are working to help patients live longer and healthier lives after bone marrow transplants. They use survival outcomes data (information on how patients have done after their transplant) to measure improvement in transplant. Survival outcomes data estimate how many people with a certain disease survive for a specific amount of time. Doctors use this data to help patients decide what treatment to have.
Choosing how much you want to know
Depending on your disease, there may be a lot of information available. You can choose which information is helpful to you as you talk with your doctor. 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
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. Your doctor can also look at your age, overall health, disease status, and previous treatments. However, no one, not even your doctor, can know for certain how your disease and body will respond to treatment.
Outcomes data can be helpful in making treatment choices. For example doctors can use outcomes data to estimate the risk or benefit of having a transplant earlier in your disease compared to waiting. The data can show how other people with a similar disease responded to different treatments. Knowing many people responded well to one treatment, while few people responded to another, may help you make a treatment choice.
What outcomes data cannot tell you
Outcomes data only show how other patients have done as a group. This information can’t tell you how you as an individual will do for sure. It can only give you an idea of how other patients have done with a similar disease and treatment. No two people are exactly the same, and you may respond differently to your transplant than someone else.
Survival data alone cannot tell you about treatment side effects or complications. Two treatments with similar survival rates may have very different side effects. Long-term side effects and quality of life will be different for every patient. Discuss all your treatment options with your doctor so you can understand both the expected benefits and the risks of side effects and complications.
Be The Match outcomes research
Be The Match® and its research program, the Center for International Blood and Marrow Transplant Research® (CIBMTR), collect and study data on transplant patients' results. We work with physicians and their patients in the U.S. and around the world. Because patients generously agree to include their outcomes data, we are able to conduct research studies that have contributed to the remarkable increase in survival and quality of life for transplant patients.
Download Understanding transplant outcomes brochure for information you can take with you when you meet with your doctor. Talk with your doctor about how the data may apply to your specific situation. To access disease-specific outcomes data for your physician that you can use when discussing outcomes visit BeTheMatchClinical.org.