National Marrow Donor Program

National Marrow Donor Program - Be The Match

Type	Non-profit
Industry	Health careNonprofit
Founded	St. Paul, Minnesota, USA (1986)
Headquarters	Minneapolis, Minnesota, USA
Key people	Jeffrey w. Chell, M.D., CEO Dennis L. Confer, M.D., Chief Medical Officer
Employees	675 (January 2010)
Website	www.BeTheMatch.org www.marrow.org

Cheek swab being obtained from a potential donor

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.

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 transplants. 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.

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 HLA 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 banks 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 Worldwide (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.

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.^[1]

• The Caitlin Raymond International Registry, 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 Foundation, 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 Administration. The US Navy also provides some funding.^[2]

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. ^[3][4]

The latter charge amounts to about $21,000, which is somewhat more than other registries in the US and abroad charge.^[5] (The final cost to the patient or his/her insurance company for the completed transplant can range from $100,000 to $250,000.^[6])

The NMDP pays affiliated donor centers and recruitment groups for every new donor they sign up.^[5]

References

1. ^ [1] All registry and cord blood figures obtained from the Bone Marrow Donors Worldwide Web site, accessed 25 January, 2007.
2. ^ Information on the National Bone Marrow Donor Registry Assessment, 2004, from ExpectMore.gov. Accessed 21 November 2006.
3. ^ name="nmdp">HLA Matching: Finding the Best Donor or Cord Blood Unit
4. ^ name="nmdp">HLA Matching: Finding the Best Donor or Cord Blood Unit
5. ^ ^{a b} Bone Marrow Transplants--Despite Recruitment Successes, National Program May Be Underutilized, report by the GAO, October 2002
6. ^ Bone Marrow/Stem Cell Transplants (BMT), from Ped-Onc Resource Center. Accessed 21 November 2006

See also

• Center for International Blood and Marrow Transplant Research

External links

• www.marrow.org, official site of Be The Match operated by National Marrow Donor Program
• HLA Registy, The HLA Registry at Community Blood Services