Q: When should my doctor start searching for my donor?
A: Identifying an unrelated donor and collecting donor cells is a complicated process with many steps. Beginning the donor search early may improve your chances of getting a transplant when you need one. Your transplant team can do an initial search of Be The Match Registry® while you are looking at treatment options or getting other treatment for your disease. The results can give your transplant team an idea of how many potential donors there may be for you. Your doctor can use this information to help plan your treatment. Learn more about the search process.
Q: How is a donor or cord blood unit found?
A: Before searching for a donor or cord blood unit for you, your doctor will check your human leukocyte antigen (HLA) type. HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not.
Because HLA markers are inherited, a matched sibling who is able to donate is the best donor. If you and your family agree, your doctor may first test your siblings to see if they are a match. However, 70% of patients (7 out of 10) do not have a match in their family. In that case, your doctor can work with Be The Match® to find an unrelated donor or cord blood unit on Be The Match Registry and other registries around the world. Be The Match Registry includes over 11 million registry members and nearly 185,000 umbilical cord blood units. Every search through Be The Match also provides you with access to more than 20.5 million potential donors and more than 590,000 cord blood units on U.S. and global registries.
Q. How likely is it I will find a match?
A: A patient’s likelihood of having an adult donor on Be The Match Registry® who is willing and able to help save a life is estimated to range from 66% to 93%, depending on race and ethnicity. Cord blood further increases the chance of finding a match for some patients.
Be The Match continues to add donors of diverse backgrounds to the registry. As a result, the chances of identifying a donor for a patient continue to improve all the time. On average, more than 52,000 new, potential donors join Be The Match Registry each month. However, some patients have relatively rare HLA types. As a result, donors still cannot be identified for all patients in need. For those patients without an available HLA matched adult donor, there may be other options available.
Q: Do I need to find my own donor?
A: No, you are not responsible for finding your own donor. Your transplant center team is responsible for finding a donor for you. We encourage patients and their immediate families to focus their energies on caring for the patient. However, some families want to get involved in recruiting donors to Be The Match Registry. If your family or friends are interested in getting involved, encourage them to host a donor drive, volunteer or raise awareness.
Q. How long will it take to find a donor for me?
A: It can take as little as a few weeks and sometimes many months to find the right match for you; typically, the time from the start of the formal search to the day of transplant is about 3 months. On occasion, no suitable donor or cord blood unit can be found. If that happens, your doctor will look at other treatment options.
Q: Who do I contact to find out what is happening with my donor or cord blood search?
A: Contact your transplant center coordinator or doctor. They will keep you up to date on how your search is going. If you have general questions about the donor search process, contact Be The Match at 1 (888) 999-6743 or firstname.lastname@example.org.
Q: How much does it cost to find a donor?
A: The search costs vary greatly from center to center and patient to patient. The costs depend on factors such as health insurance coverage and ease or difficulty of finding a suitable donor, as well as transplant center-specific billing policies. Examples of costs in the search include:
- The number of donors to be tested and their geographic locations
- Processing and collecting tissue-typing samples
- Donor medical evaluations needed
- Getting and transporting the marrow, PBSC or cord blood unit for transplant
For the best understanding of search costs for a specific transplant center, contact the center's financial coordinator.
Q: Should I have my family members and friends tested?
A: To find a match, doctors look for donors with HLA markers that match your HLA markers. Because you inherit half of your HLA markers from your mother and half from your father, each brother and sister who has the same mother and father as you has a 1 in 4 chance of matching you. It is very unlikely that extended family members will be a match for you. It is also extremely unlikely that a friend or neighbor will match you. Your doctor can tell you more about who should be tested and how this can be done.
If your friends and family members are willing to be donors for any patient in need, they may be able to join the Be The Match Registry.
Q: Will I ever meet my donor?
A: If you have an unrelated donor, you will not know who your donor is at the time of your transplant. We follow strict confidentiality policies to protect the privacy of both you and your donor. U.S. law and our federal contract require us to keep donor and patient information confidential and separate. Our post-transplant communication policies are a crucial part of this system. In addition, each country we work with has their own policies concerning donor and recipient confidentiality, by which we must abide.
According to U.S. guidelines, you and your donor cannot learn each other's identities for the first year after your transplant. After that one-year waiting period, if both donor and recipient agree, they are permitted to contact each other. However, donor centers in some countries require a longer waiting period, and some do not ever allow you and your donor to learn each other's identities.
Within the first year after the transplant, most transplant centers and donor centers will allow anonymous contact. All letters, cards, and gifts must be sent through your transplant center. Your communications will be checked to ensure that no identifying details are shared.
If you are interested in direct contact with your donor, after the required waiting period, your transplant center can assist you with the process.