What is Be The Match Registry?
The Be The Match Registry is a non-profit organization that is operated by the National Marrow Donor Program (NMDP). Its goal is to give patients transplants that are needed to save their life. Transplants may be organ transplants – bone marrow transplants, cord blood or stem cell transplants. It’s like a clearinghouse for transplants, with extensive computer networks that have the capability to match a patient who desperately needs that transplant with potential donors.
The gift of a transplant is one that comes directly from the heart and affects many lives simultaneously. Read this testimonial from one of their clients:
who has now given my husband a chance at life. He received his stem
cells last Thursday, so we don’t know what his final outcome will be,
but at least now he has a chance! When we heard that he would need
a bone marrow transplant, I signed up for the registry in hopes that I
can some day repay the gift that has been given to us! Thank you to all
that give others this chance!”
In fact, Be The Match Registry, with its headquarters located in Minneapolis, is not only there for assisting patients but also for physicians and the transplant donors.
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How The Registry Works
Every four minutes someone is diagnosed with a blood cancer. A stem cell transplant from either blood stem cells or a bone marrow transplant could change this whole picture for the person who is ill and you could be the one that knows you saved someone’s life.
There are two ways you can work with the Registry: 1) as a donor, and 2) as a recipient.
If You Are Thinking About Being A Donor
A swab inside the mouth is all that’s needed to get started to become a donor. You simply swab the inside of your cheek with the long Q-tip and mail it back to the Be The Match Registry. Your swab is stored in a 40,000 square foot facility. Technicians send the swabs to a special lab to determine your DNA type. Then the data is entered in the database and you wait to find out when you can be a donor. A phone call is usually the type of contact made to potential donors.
Hospitals are able to search the Registry database for a match and then give you a call when you can be the one to save a life. Curious to see what the process is like? Watch below.
A match between donor and recipient is based on HLA matching. This is when your blood stem cells match very closely to another person. HLA stands for human leukocyte antigens, which determine if your cells will attack another person’s cells or not. Blood needs to match 8-10 HLA markers – and the process is more complicated than ABO blood testing. If cord blood is used, only 4 to 6 HLA markers are needed for a match.
You have a 25% chance of matching HLA markers with your siblings, and a 50% chance for your parents and your children. About 70% of people don’t have a close match in HLA markers. You have up to a 99% chance of matching someone in the registry depending on your ethnicity and the number of people found with your same ethnic background.
If you like scientific info and want to know more about HLA compatibility, check out this video.
If You Are Chosen To Be A Donor
A list of people who will match the potential recipient can be accessed on the computer. However, additional information will determine who is the best donor. For example, where does the person live? What is the potential donor’s age? Does
the potential donor want to give the ‘donation’ or has he or she changed his mind in the interim?
There’s no contact between the donor and recipient until much later in the recovery process. Often recipients feel like donors are family members. However, cord blood donors are always anonymous, and not all donors and recipients will meet.
If you match a patient, you will not pay a dime to carry through with the process. It could take 30-40 hours over 4 to 6 weeks. All your travel expenses are reimbursed by Be The Match.
2. The patient’s doctor will ask you to donate via a peripheral blood stem cell donation. You will be injected with a drug called Filgrastim that increases the stem cells in your body for five days.
3. Headaches, muscle aches and bone aches may result from the drug but these dissipate after a week of donating.
4. A blood sample is taken. You are back to your normal routine in less than 2 days. You have just given a stem cell blood sample that will potentially save someone’s life.
5. If you are asked to give a marrow donation, you receive anesthesia and a sample is taken from your pelvis. This is surgery, but no pain is felt.
6. A needle pulls out some of the bone marrow, which is then replaced in the next 4-6 weeks. Since only 5% of your bone marrow is taken in the sample, your immune system will not suffer.
7. You are back to your normal routine in less than a week.
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Your medical data is entered into the registry via your doctor if you are in need of an transplant, cord blood transplant or stem cell donation. Since part of the success depends on your ethnic background, it’s good to see that almost all ethnic
backgrounds are represented in the database.
Here are some of the latest statistics for 2017 (courtesy of mixedmarrow.org):
Why Donations to the Be The Match Registry are Good
Donating some of your own cells – whether it’s bone marrow or blood cells – has become a relatively easy process now. This is certainly a great thing because without a transplant or blood stem cells, the person diagnosed with a blood cancer will die.
Donating to the Be The Match Registry is good because you are contributing to save someone’s life. The chance of you becoming a successful match is high. Many donors report that becoming a donor was the best thing they did in their life.
Find out more about the Be The Match Registry at BeTheMatch.org. If you choose to give them a call, their number is 1-800-MARROW-2.