Over the past 25 years Be The Match®, operated by the National Marrow Donor Program® (NMDP), has managed the largest and most diverse bone marrow registry in the world. Be The Match® is the hub of a global transplant network that connects more than 600 leading centers worldwide, including more than 135 transplant centers in the United States and more than 30 international transplant centers.
AADP is an official recruitment center of the Be The Match Register.
The Nature of Blood Stem Cells and Marrow
Q: What are blood stem cells and why are they so vital?
A: Blood Stem Cells are the basic building blocks of our blood. They produce vital blood components, such as white cells which fight infection, red cells which carry oxygen, and platelets which prevent bruising and bleeding. Any disease that attacks your bone marrow, where your blood stem cells are most often located, may eliminate your body’s ability to protect itself. Most fatal blood diseases have traditionally been fought with radiation or chemotherapy. In countering disease, both forms of treatment may seriously damage the human body. By providing patients in need of compatible blood stem cells, you can give them a second chance at a healthy life.
Q: Where do you get blood stem cells?
A: Blood Stem Cells used in transplants can be found in your bone marrow, and to a much lesser extent in your circulating blood. They are also found in a baby’s umbilical cord blood.
Q: What is bone marrow?
A: Bone marrow is soft spongy tissue found in the large bones of the body. It is very rich in stem cells and is primarily in charge of producing more blood stem cells that make the rest of your blood cells like red blood cells, white blood cells and platelets.
Blood Stem Cell Transplantation
Q: Who needs a bone marrow transplant?
A: Bone marrow transplantation is a proven cure for patients with aplastic anemia, some leukemias, lymphomas, and diseases of the immune system.
Q: Must donor and patient be related?
A: Initially, bone marrow donors were sought only among family members. However, approximately 70% of patients needing a transplant do not have a family member who is a compatible donor. Through HLA typing, non-related compatible donors can be identified and used successfully in a bone marrow transplant.
Q: How is a donor matched to a patient?
A: When you register to become a donor, you provide a cheek swab sample. From that sample, we are able to obtain what is called your ’tissue type’ or your ‘HLA type’. This string of markers is what we use to match a patient to a donor.
Q: What is HLA?
A: HLA stands for Human Leukocyte Antigens, they are ‘markers’ on the white blood cells. These antigens are inherited characteristics, just as is the color of one’s eyes and hair or skin. In a tissue transplant, the closer the match in HLA type between the donor and the recipient, the greater the chance that the transplant will be successful. Due to these genetic factors, patients have the best chance of finding a donor who is the same racial background.
Q: What are the odds of matching HLA types?
A: The odds of a siblings having identical tissue types are 1 in 4. The odds of matching an unrelated donor are between 1 in 100 and 1 in a million. Currently, only 25% of the National Registry represent the racial minority communities; therefore, the current odds for a minority patient to find a matching unrelated donor may be more close to 1 in a million. This is the reason for the current funding programs geared specifically to drastically increase the number of donors representing the ethnic minority communities.
Q: How do patients receive donated blood stem cells?
A: Patients receive donated blood stem cells much like a regular blood transfusion. The difference between the two is that before receiving the stem cells, a patient needs to undergo very intensive chemotherapy to wipe out his/her remaining bone marrow and immune system. Once the immune system is completely destroyed, the donor’s blood stem cells are administered like a blood transfusion. Then, if all goes well, the stem cells will make its way to the patient’s bone marrow and will start producing new stem cells.
Who is Asian American Donor Program
Q: Who is Asian American Donor Program (AADP) and how are we related to the Be The Match?
A: AADP began its National Marrow Donor Program (NMDP) affiliation in 1989. AADP is a community based non-profit, for social benefit (501©3) organization specialized in conducting outreach and donor registration drives in and with diverse communities. AADP is an official recruitment center of the Be The Match Registry. AADP was started in 1989.
Becoming a Potential Bone Marrow/Blood Stem Cell Donor
Q: How do you become a bone marrow donor?
A: Please visit our How to Become a Donor page. The first step to being a donor is to register to get on to the NMDP database of potential donors. First, a cheek swab sample is taken to determine your Human Leukocyte Antigen (HLA) type. The HLA type is listed in a computerized database, which is linked with the NMDP. If you are a potential match, you are contacted for additional blood tests. If laboratory tests reflect a potentially successful match, a detailed information session is arranged so that you can decide whether or not to proceed. If you decide to proceed, you are provided a full health screening before the actual bone marrow or PBSC collection.
Q: Why are younger donors preferred?
A: If you are between the ages of 18 and 44, patients especially need you. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor’s age. Research shows that cells from younger donors lead to more successful transplants. That’s because younger donors produce more and higher-quality cells than older donors.
Q: How do I register for the Be The Match registry?
A: You can register by attending one of AADP’s drives. Visit our calendar for a listing of all our upcoming drives. When you come to register, please remember to bring complete information of two contacts who do not live with you and who do not live with each other. If none of our drives are convenient for you, you can request that a home test kit be mailed to you.
Q: What information do you need from me when I register?
A: We will need the following information from you in order to register
- Complete a donor registration form which includes:
- A short health history questionnaire
- Personal identifying information
- Provide the name and address of two contacts that do not live with you or with each other.
- We need to collect a tissue sample from the inside of your cheek using a swab kit.
Q: How much time does it take to become a donor?
A: Registering, completing the consent form and swabbing the inside of your cheek will take approximately 15 minutes. Identifying your HLA tissue type and listing you on the Registry could take 8 to 10 weeks. If you are identified as a potential donor for a specific patient and you are selected to donate bone marrow or PBSC, it could take up to 30 hours of your time over a 3 to 4 month time period.
Q: Do I have to pay to register?
A: The tissue typing process to register is currently completely funded for all people who have any ethnic minority descent. For the purposes of the NMDP, the category of Ethnic Minorities include anyone with some or complete heritage in the Asian and Pacific Islander, Hispanic/Latino, African American/African, and Native American groups. Because of the special need for more ethnically and racially diverse donors, most of our funds are directed specifically for registering people in this category. The category of ‘non-minority’ is used for people who’s tissue types are already well represented in the registry, and includes people of Caucasian, Middle Eastern, and North African descent. Sometimes, those in the ‘non-minority’ category may be asked to help cover the costs of their own tissue typing should they wish to join the registry.
When You Are Called As A Match
Q: What is the Bone Marrow Donation Process?
A: The bone marrow is collected from the donor during a surgical procedure using a special needle inserted into the hip bone and NOT the spine. The procedure is usually performed in the hospital operating room, as an outpatient service, but may require a donor to spend one night in the hospital. For a more detailed explanation, please visit our Donation Process page.
Q: What is the PBSC Donation Process?
A: For four or five days before the PBSC donation, the donor is given an injection of a medication called Filgrastim to increase the number of stem cells released into the blood stream. After receiving the medication, peripheral blood stem cells can be collected through the process of apheresis. Donating PBSC is similar to donating platelets at a blood bank. The donor’s blood is removed through a sterile needle placed in a vein in one arm and passed through an apheresis machine that separates out the stem cells. The remaining blood, minus the stem cells, is returned to the donor through a sterile needle in the other arm.
Q: Does it hurt?
A: Because anesthesia is used in bone marrow donation, you will feel no pain during the collection. Most donors experience soreness or tenderness in the lower back area for a few days or weeks after the collection. The sensation has been described as similar to the bruised felling one gets after falling on ice. For PBSC donation, most donors experience bone pain while receiving the filgrastim injections. This pain typically disappears about one day after the blood stem cell donation.
Q: Who pays for the collection and other costs incurred?
A: All costs associated with the donation are covered by the patient’s health insurance. Donors are also automatically covered under a health insurance policy provided by the Be The Match.
Q: What is my commitment if i join?
A:When you join the Be The Match Registry, you make a commitment to:
- Keep us updated if your contact information changes, you have significant health changes or you change your mind about being a donor
- Respond quickly if you are contacted as a potential match for a patient
- Donate to any searching patient who matches you
- Be listed on the registry until your 61st birthday, unless you ask to be removed
You have the right to change your mind about being a donor at any time. Donating is always voluntary. If you decide you do not want to donate, let us know right away. That way we can continue the search for another donor without dangerous delays for the patient.
Q: How many times can I donate?
A: Because your marrow and blood stem cells completely regenerate, you can technically donate several times in your life. It is rare to come up as a match for several people. You may never get called as a potential match or you might get called once or twice in your lifetime. Being a donor for someone does not stop you from donating to someone else in the future if the need arises. It also does not affect your ability to receive a transplant in the future should you need one. Your marrow takes approximately 4-6 weeks to completely regenrate itself and your blood stem cells after PBSC will normalize within 1-2 days after the donation.
What would the side effects of donation be?
The side effects of each procedure differ, but with either procedure, most donors are back to their daily routine in a few days.
Q: What are the PBSC Donation Side Effects?
You may experience headaches, or bone or muscle aches for several days before donation. These are side effects from the filgrastim injections. The side effects go away shortly after the donation. Your donor contact representative will follow up with you until you report a full recovery. Most PBSC donors report full recovery within two weeks of donation. For more information, visit the PBSC Side Effects and Risks section.
Q: What are the Marrow Donation Side Effects?
You can expect to feel some soreness in your lower back. Most donors are back to their normal routine in a few days and most feel fully recovered within three weeks. Your donor contact representative will follow up with you until you report a full recovery. Your marrow returns to normal levels within a few weeks, visit the Side Effects and Risks section.
Q: How long will you take to recover?
Donors should be able to return to work, school, and any other activities within one to seven days after donation. On average, most PBSC donors report that they feel completely recovered within two weeks of donation and most marrow donors report that they feel completely recovered within three weeks of donation. The recovery time frame varies depending on the individual donor and the type of donation.
A good rule of thumb is, the more physically demanding a job, the longer the recovery. For example, if you’re a postal service worker or a construction worker whose day involves a lot of heavy lifting and moving about, your return to work might be closer to the seven-day end of the spectrum. Someone with a less physically demanding job may be able to return to work the same or next day.