National Marrow Donor Program
The National Marrow Donor Program (NMDP) is a nonprofit organization based in Minneapolis, Minnesota, that operates the federally funded registry of volunteer hematopoietic cell donors in the United States.
These potential donors, numbering more than 6.8 million as of October 2007, have volunteered to donate hematopoietic cells to patients in need of a hematopoietic cell transplant. Since its founding in 1986 through December 3, 2007, the NMDP celebrated 30,000 successful transplants.
Also included in the pool of hematopoietic donors registered with the NMDP are more than 69,000 umbilical cord blood units, which can also be used as the source of hematopoietic cells used in a transplant. In October 2006, the NMDP was awarded a federal contract to operate the national cord blood registry in the U.S.
Hematopoietic cell transplants are used to treat many life-threatening disorders such as leukemia, lymphoma, aplastic anemia, as well as certain immune system disorders and genetic disorders. Hematopoietic (blood-forming) cells can come from bone marrow, umbilical cord blood, or the circulating blood (peripheral blood stem cells, or 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.
The need for large registries
The NMDP 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.
For the remaining 70%, an unrelated hematopoietic cell donor is required in order to receive a transplant. Because the odds that two random individuals will be HLA matched exceeds 1 in 20,000, a registry will not be successful unless it contains a very 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) have established relationships with the NMDP and work together to arrange the collection and transfer of donated bone marrow (or cord blood).
When an adult volunteer donor (marrow or PBSC) registers with the NMDP, his or her HLA information is transmitted to the NMDP where it is entered into the NMDP’s computers. Contact information on the volunteer donor is also obtained so that he or she can be contacted by the NMDP if ever matched with a searching patient. The NMDP also has more than 69,000 cord blood units listed on its registry. These cord blood units are stored at 24 cord blood banks (as of October 2007) around the world that are affiliated with the NMDP.
Physicians can search the NMDP registry on behalf of a patient who needs a transplant by submitting the patient’s HLA tissue type to the NMDP, which then searches its computerized database for an HLA-matched volunteer donor. When a match is made, the NMDP contacts the potential donor, and he or she is notified that a match has been made with a patient.
After the potential donor has been educated about the donation process, he or she is asked to donate. If the potential donor wishes to proceed, he or she is given a medical exam, which includes testing the blood for infectious diseases. If the potential donor meets all donation requirements, his or her bone marrow or peripheral blood stem cells are collected and transferred by courier to the awaiting patient.
The NMDP participates with Bone Marrow Donors Worldwide (BMDW), the 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, 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 40 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 seventeen transplant centers (where patients can receive transplants using cells from NMDP donors) outside of the United States.
Other U.S. registries
Although the NMDP is the sole federally funded and Congressionally authorized stem cell registry in the United States, three other smaller registries exist.
- 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. It has registered approximately 110,000 volunteer donors and has access to approximately 400 cord blood units.
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 program also receives income from donations, from fees charged to donors for tissue typing (about $50 as of 2006, waived for some minority groups), from fees charged for in-depth database searches (initial searches are free, full searches can cost several thousand dollars), and from the 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.
-  All registry and cord blood figures obtained from the Bone Marrow Donors Worldwide Web site, accessed 25 January, 2007.
- Information on the National Bone Marrow Donor Registry Assessment, 2004, from ExpectMore.gov. Accessed 21 November 2006.
- Bone Marrow Transplants--Despite Recruitment Successes, National Program May Be Underutilized, report by the GAO, October 2002
- Bone Marrow/Stem Cell Transplants (BMT), from Ped-Onc Resource Center. Accessed 21 November 2006
- www.marrow.org, official site of the National Marrow Donor Program