National Marrow Donor Program
Encyclopedia
National Marrow Donor Program® (NMDP)Be The Match is the global leader in providing marrow and umbilical cord blood transplants to patients with leukemia, lymphoma and other diseases. The nonprofit organization matches patients with donors, educates health care professionals and conducts research so more lives can be saved. The NMDP also operates Be The Match®, which provides support for patients, and enlists others in the community to contribute financially, volunteer, and join the Be The Match Registry® – the world’s largest listing of potential marrow donors and donated cord blood units.
Be The Match registry is the world's largest adult donor and cord blood registry, listing more than 9 million individuals and more than 185,000 cord blood units. Hematopoietic cells from donors or cord blood units are used to transplant patients with a variety of blood
, bone marrow
or immune system
disorders. As of January 2010, the NMDP had facilitated more than 43,000 transplants worldwide.
. Patients needing a hematopoietic cell transplant but who lack a suitably matched donor in their family can search the Be The Match registry for a matched unrelated donor or cord blood unit.
Hematopoietic cells are used to transplant patients with life-threatening disorders such as leukemia
, lymphoma
, aplastic anemia
, as well as certain immune system and metabolic disorders. Hematopoietic cells can come from bone marrow, umbilical cord blood, or the circulating blood (peripheral blood stem cells (PBSCs). Hematopoietic cells are a type of adult (i.e., non-embryonic) stem cell
that can multiply and differentiate into the three types of blood cells: red blood cells, white blood cells, and platelets.
Cord blood cells are obtained from the umbilical cord and placenta of a newborn baby after the cord is clamped and cut as in a normal delivery. The cord blood is then stored frozen in a bank until needed for a transplant. The baby is not harmed in any way by this collection, as the cord blood is collected from tissues that in the past had been discarded as medical waste.
matched donor among their family members.
The remaining 70% require an unrelated hematopoietic cell donor as a transplant source. Because the odds that two random individuals are HLA matched exceeds one in 20,000, a registry's success depends on a large number of volunteer donors.
When an adult volunteer donor (marrow or PBSC) registers with the NMDP, their HLA and contact information is sent to the NMDP, which stores in their computers. The NMDP also has more than 160,000 cord blood units, listed by HLA type, in its Be The Match registry. These cord blood units are stored at 26 NMDP-affiliated cord blood bank
s around the world.
Physicians look for donor material on behalf of a patient by submitting the patient’s HLA tissue type to the NMDP, which then searches its computerized database for matching donor (marrow or PBSC) or cord blood units.
If we find a matching adult donor, we notify the donor. After educating the potential donor about the donation process, we ask them to donate. If the potential donor wishes to proceed, they receive a medical exam, which includes testing the blood for infectious diseases. If the potential donor meets all requirements, the NMDP collects their bone marrow or peripheral blood stem cells and sends them by courier to the patient.
If NMDP finds a match to a cord blood unit, it will notify the cord blood bank that stores that unit and arrange to send it to the patient. Cord blood units are shipped frozen, in specially designed coolers, and are thawed after arrival at the patient's hospital. The transplant physician evaluating the patient considers a number of clinical factors to decide whether to use an adult donor's marrow or PBSC, or cord blood for a particular patient.
(BMDW), an organization that coordinates communications among the world’s registries. BMDW is based in Leiden, The Netherlands. Throughout the world, there are an estimated ten million volunteer hematopoietic cell donors. Most national registries, including the NMDP's Be The Match registry, have access to these worldwide volunteer donors, either through the BMDW or through individually arranged agreements.
Although based in the United States, the NMDP has worldwide connections. More than 50 percent of the transplants arranged by the NMDP involve either a foreign patient or a foreign donor. The NMDP contracts with seven donor centers (where donors are recruited) outside of the United States. These are located in The Netherlands, Israel
, Sweden
, Norway
, and Germany
(three centers).
In addition, the NMDP is affiliated with many transplant centers (where patients can receive transplants using cells from NMDP donors) outside of the United States.
In May 2004, the Gift of Life Bone Marrow Foundation and the NMDP formed a partnership, with the Gift of Life Bone Marrow Foundation becoming an Associate Donor Registry of the NMDP.
In July 2007, the Caitlin Raymond International Registry became an affiliated registry with the NMDP.
. The US Navy also provides some funding.
The program also receives income from financial contributions.
Fees charged to donors for tissue typing (it costs about $100 to add a donor to the registry -- these fees are waived when financial contributions are available to cover the costs)
Fees charged for in-depth database searches (initial searches are free, in-depth searches can cost several thousand dollars),
Fees charged to the transplanting hospital once a match is found and the stem cells have been transferred.
The latter charge amounts to about $21,000, which is somewhat more than other registries in the US and abroad charge. (The final cost to the patient or his/her insurance company for the completed transplant can range from $100,000 to $250,000.)
The NMDP pays affiliated donor centers and recruitment groups for every new donor they sign up.
Be The Match registry is the world's largest adult donor and cord blood registry, listing more than 9 million individuals and more than 185,000 cord blood units. Hematopoietic cells from donors or cord blood units are used to transplant patients with a variety of blood
Blood
Blood is a specialized bodily fluid in animals that delivers necessary substances such as nutrients and oxygen to the cells and transports metabolic waste products away from those same cells....
, bone marrow
Bone marrow
Bone marrow is the flexible tissue found in the interior of bones. In humans, bone marrow in large bones produces new blood cells. On average, bone marrow constitutes 4% of the total body mass of humans; in adults weighing 65 kg , bone marrow accounts for approximately 2.6 kg...
or immune system
Immune system
An immune system is a system of biological structures and processes within an organism that protects against disease by identifying and killing pathogens and tumor cells. It detects a wide variety of agents, from viruses to parasitic worms, and needs to distinguish them from the organism's own...
disorders. As of January 2010, the NMDP had facilitated more than 43,000 transplants worldwide.
What we Do
The NMDP coordinates the collection of hematopoietic ("blood-forming") cells that are used to perform what used to be called bone marrow transplants, but are now more properly called hematopoietic cell transplantsBone marrow transplant
Hematopoietic stem cell transplantation is the transplantation of multipotent hematopoietic stem cell or blood, usually derived from bone marrow, peripheral blood stem cells, or umbilical cord blood...
. Patients needing a hematopoietic cell transplant but who lack a suitably matched donor in their family can search the Be The Match registry for a matched unrelated donor or cord blood unit.
Hematopoietic cells are used to transplant patients with life-threatening disorders such as leukemia
Leukemia
Leukemia or leukaemia is a type of cancer of the blood or bone marrow characterized by an abnormal increase of immature white blood cells called "blasts". Leukemia is a broad term covering a spectrum of diseases...
, lymphoma
Lymphoma
Lymphoma is a cancer in the lymphatic cells of the immune system. Typically, lymphomas present as a solid tumor of lymphoid cells. Treatment might involve chemotherapy and in some cases radiotherapy and/or bone marrow transplantation, and can be curable depending on the histology, type, and stage...
, aplastic anemia
Aplastic anemia
Aplastic anemia is a condition where bone marrow does not produce sufficient new cells to replenish blood cells. The condition, per its name, involves both aplasia and anemia...
, as well as certain immune system and metabolic disorders. Hematopoietic cells can come from bone marrow, umbilical cord blood, or the circulating blood (peripheral blood stem cells (PBSCs). Hematopoietic cells are a type of adult (i.e., non-embryonic) stem cell
Stem cell
This article is about the cell type. For the medical therapy, see Stem Cell TreatmentsStem cells are biological cells found in all multicellular organisms, that can divide and differentiate into diverse specialized cell types and can self-renew to produce more stem cells...
that can multiply and differentiate into the three types of blood cells: red blood cells, white blood cells, and platelets.
Collecting blood cells
Bone marrow and PBSCs come from living adult donors. PBSCs are collected from the donor's blood after five or six days of taking a drug that causes Blood (hematopoietic) cells in the bone marrow to move into the circulating blood. About 60% of donations are made in this way. The second way to donate cells is by extracting bone marrow from the donor's pelvic bones while the donor is under anesthesia. In both cases, recovery is usually swift and donors typically have fully restored marrow and blood cell counts in under two weeks.Cord blood cells are obtained from the umbilical cord and placenta of a newborn baby after the cord is clamped and cut as in a normal delivery. The cord blood is then stored frozen in a bank until needed for a transplant. The baby is not harmed in any way by this collection, as the cord blood is collected from tissues that in the past had been discarded as medical waste.
The need for large registries
The Be The Match registry is one of many registries of unrelated donors and cord blood units in the world. Most large, developed nations have such registries. Large registries of unrelated donors are needed because only about 30% of patients with diseases treatable with hematopoietic cell transplantation can find a suitably HLAHuman leukocyte antigen
The human leukocyte antigen system is the name of the major histocompatibility complex in humans. The super locus contains a large number of genes related to immune system function in humans. This group of genes resides on chromosome 6, and encodes cell-surface antigen-presenting proteins and...
matched donor among their family members.
The remaining 70% require an unrelated hematopoietic cell donor as a transplant source. Because the odds that two random individuals are HLA matched exceeds one in 20,000, a registry's success depends on a large number of volunteer donors.
How the NMDP operates
The NMDP coordinates hematopoietic cell transplants by managing a worldwide network of affiliated organizations. These organizations (mostly hospitals and blood banks) have established relationships with the NMDP and work together to arrange the collection and transfer of donated bone marrow or PBSCs, or the transfer of previously collected cord blood.When an adult volunteer donor (marrow or PBSC) registers with the NMDP, their HLA and contact information is sent to the NMDP, which stores in their computers. The NMDP also has more than 160,000 cord blood units, listed by HLA type, in its Be The Match registry. These cord blood units are stored at 26 NMDP-affiliated cord blood bank
Cord blood bank
A cord blood bank is a facility which stores umbilical cord blood for future use. Both private and public cord blood banks have developed since the mid- to late-1990s in response to the potential for cord blood transplants in treating diseases of the blood and immune systems.Public banks accept...
s around the world.
Physicians look for donor material on behalf of a patient by submitting the patient’s HLA tissue type to the NMDP, which then searches its computerized database for matching donor (marrow or PBSC) or cord blood units.
If we find a matching adult donor, we notify the donor. After educating the potential donor about the donation process, we ask them to donate. If the potential donor wishes to proceed, they receive a medical exam, which includes testing the blood for infectious diseases. If the potential donor meets all requirements, the NMDP collects their bone marrow or peripheral blood stem cells and sends them by courier to the patient.
If NMDP finds a match to a cord blood unit, it will notify the cord blood bank that stores that unit and arrange to send it to the patient. Cord blood units are shipped frozen, in specially designed coolers, and are thawed after arrival at the patient's hospital. The transplant physician evaluating the patient considers a number of clinical factors to decide whether to use an adult donor's marrow or PBSC, or cord blood for a particular patient.
International connections
The NMDP cooperates with Bone Marrow Donors WorldwideBone Marrow Donors Worldwide
Bone Marrow Donors Worldwide is an organization based in Leiden, Netherlands, that coordinates the collection of the HLA phenotypes of volunteer hematopoietic cell donors and cord blood units....
(BMDW), an organization that coordinates communications among the world’s registries. BMDW is based in Leiden, The Netherlands. Throughout the world, there are an estimated ten million volunteer hematopoietic cell donors. Most national registries, including the NMDP's Be The Match registry, have access to these worldwide volunteer donors, either through the BMDW or through individually arranged agreements.
Although based in the United States, the NMDP has worldwide connections. More than 50 percent of the transplants arranged by the NMDP involve either a foreign patient or a foreign donor. The NMDP contracts with seven donor centers (where donors are recruited) outside of the United States. These are located in The Netherlands, Israel
Israel
The State of Israel is a parliamentary republic located in the Middle East, along the eastern shore of the Mediterranean Sea...
, Sweden
Sweden
Sweden , officially the Kingdom of Sweden , is a Nordic country on the Scandinavian Peninsula in Northern Europe. Sweden borders with Norway and Finland and is connected to Denmark by a bridge-tunnel across the Öresund....
, Norway
Norway
Norway , officially the Kingdom of Norway, is a Nordic unitary constitutional monarchy whose territory comprises the western portion of the Scandinavian Peninsula, Jan Mayen, and the Arctic archipelago of Svalbard and Bouvet Island. Norway has a total area of and a population of about 4.9 million...
, and Germany
Germany
Germany , officially the Federal Republic of Germany , is a federal parliamentary republic in Europe. The country consists of 16 states while the capital and largest city is Berlin. Germany covers an area of 357,021 km2 and has a largely temperate seasonal climate...
(three centers).
In addition, the NMDP is affiliated with many transplant centers (where patients can receive transplants using cells from NMDP donors) outside of the United States.
Other United States registries
Although the NMDP operates the sole federally funded and Congressionally authorized stem cell registry in the United States, three other smaller registries exist.- The Caitlin Raymond International RegistryCaitlin Raymond International RegistryThe Caitlin Raymond International Registry is a bone marrow registry that is a subsidiary of the University of Massachusetts Memorial Medical Center in Worcester, Massachusetts.-Organization:...
, based at the UMass Memorial Medical Center in Massachusetts, has approximately 64,000 adult volunteer donors and access to approximately 10,000 cord blood units.
- The American Bone Marrow Donor Registry (ABMDR), based in Mandeville, Louisiana, has approximately 32,000 adult volunteer donors. The Caitlin Raymond International Registry serves as the search center for the ABMDR.
- The Gift of Life Bone Marrow FoundationGift of Life Bone Marrow FoundationThe Gift of Life Bone Marrow Foundation is one of the public bone marrow, blood stem cell and umbilical cord blood registries in the United States...
, based in Boca Raton, Florida, was established in 1991 as a recruitment organization for donors of Jewish ethnic ancestry (now serving the broader community). It has registered approximately 160,000 volunteer donors and has access to approximately 1,000 cord blood units. Gift of Life is accredited by the World Marrow Donor Association.
In May 2004, the Gift of Life Bone Marrow Foundation and the NMDP formed a partnership, with the Gift of Life Bone Marrow Foundation becoming an Associate Donor Registry of the NMDP.
In July 2007, the Caitlin Raymond International Registry became an affiliated registry with the NMDP.
Finances
The NMDP receives annually about US$ 23 million from the US government through the Health Resources and Services AdministrationHealth Resources and Services Administration
The Health Resources and Services Administration , is an agency of the U.S. Department of Health and Human Services located in Rockville, Maryland...
. The US Navy also provides some funding.
The program also receives income from financial contributions.
Fees charged to donors for tissue typing (it costs about $100 to add a donor to the registry -- these fees are waived when financial contributions are available to cover the costs)
Fees charged for in-depth database searches (initial searches are free, in-depth searches can cost several thousand dollars),
Fees charged to the transplanting hospital once a match is found and the stem cells have been transferred.
The latter charge amounts to about $21,000, which is somewhat more than other registries in the US and abroad charge. (The final cost to the patient or his/her insurance company for the completed transplant can range from $100,000 to $250,000.)
The NMDP pays affiliated donor centers and recruitment groups for every new donor they sign up.
External links
- www.marrow.org, official site of Be The Match operated by National Marrow Donor Program
- HLA RegistyCommunity Blood ServicesCommunity Blood Services is a blood bank that collects blood donations, and offers cord blood banking and bone marrow registration and donations...
, The HLA Registry at Community Blood Services