National Marrow Donor Program

Last updated
National Marrow Donor Program
Type Non-profit
Industry Health care
Founded St. Paul, Minnesota, USA (1986)
Headquarters Minneapolis, Minnesota, USA
Key people
Amy L. Ronneberg
CEO
President, Be The Match BioTherapies
Number of employees
996 (October 2019)
Website BeTheMatch.org
BeTheMatch.org.mx
BeTheMatchBioTherapies.com
BeTheMatchClinical.org

The National Marrow Donor Program (NMDP) is a nonprofit organization founded in 1986 and based in Minneapolis, Minnesota, that operates the Be The Match Registry of volunteer hematopoietic cell donors and umbilical cord blood units in the United States.

Contents

The Be The Match Registry is the world's largest hematopoietic cell registry, listing more than 22 million individuals and more than 300,000 cord blood units. Hematopoietic cells from NMDP donors or cord blood units are used to transplant patients with a variety of blood, bone marrow or immune system disorders. As of December 2020, the NMDP had facilitated more than 100,000 transplants worldwide.

Activities

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. [1]

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.

Cheek swab being obtained from a potential donor Cotton-Swab-Cheek-090105-N-5681S-008.jpg
Cheek swab being obtained from a potential donor

Collecting hematopoietic cells

Bone marrow and PBSCs come from living adult donors. Bone marrow is extracted from the donor's pelvic bones while the donor is under general or local anesthesia. PBSCs are collected from the donor's blood after five or six days of taking a drug that causes hematopoietic cells in the bone marrow to move into the circulating blood. 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. [2] Large registries of unrelated donors are needed because only about 30% of patients with diseases treatable with hematopoietic cell transplantation can find a fully HLA matched donor among their family members. [3]

The remaining 70% require an unrelated hematopoietic cell donor as a transplant source. [4] 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.

Method of operation

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 it in their computers. The NMDP also has nearly 238,000 cord blood units, listed by HLA type, in its Be The Match registry. These cord blood units are stored at 19 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 the NMDP finds a match with an adult donor, they notify the donor. After educating the potential donor about the donation process, the NMDP asks 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 the NMDP finds a match to a cord blood unit, they 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. [5] BMDW is based in Leiden, The Netherlands. Throughout the world, there are an estimated 30 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). [6]

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, another domestic registry exists. [7]

In May 2004, the Gift of Life Marrow Registry and the NMDP formed an associate donor registry partnership.

In July 2007, the Caitlin Raymond International Registry became an affiliated registry with the NMDP. Caitlin Raymond closed its doors a few years later.

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. [12]

The program also receives income from donations, from monetary donations from tissue donors for tissue typing (about $50 as of 2008), 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. [13] (The final cost to the patient or the patient's insurance company for the completed transplant can range from $100,000 to $250,000. [14] )

The NMDP pays affiliated donor centers and recruitment groups for every new donor they sign up. [13]

See also

Related Research Articles

Bone marrow Semi-solid tissue in the spongy portions of bones

Bone marrow is a semi-solid tissue found within the spongy or cancellous portions of bones. In birds and mammals, bone marrow is the primary site of new blood cell production or haematopoiesis. It is composed of hematopoietic cells, marrow adipose tissue, and supportive stromal cells. In adult humans, bone marrow is primarily located in the ribs, vertebrae, sternum, and bones of the pelvis. Bone marrow comprises approximately 5% of total body mass in healthy adult humans, such that a man weighing 73 kg will have around 3.65 kg of bone marrow.

Hematopoietic stem cell transplantation Medical procedure to replace blood or immune stem cells

Hematopoietic stem-cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood. It may be autologous, allogeneic or syngeneic.

Graft-versus-host disease

Graft-versus-host disease (GvHD) is a syndrome, characterized by inflammation in different organs. GvHD is commonly associated with bone marrow transplants and stem cell transplants.

A cord blood bank is a facility which stores umbilical cord blood for future use. Both private and public cord blood banks have developed in response to the potential for cord blood in treating diseases of the blood and immune systems. Public cord blood banks accept donations to be used for anyone in need, and as such function like public blood banks. Traditionally, public cord blood banking has been more widely accepted by the medical community. Private cord blood banks store cord blood solely for potential use by the donor or donor's family. Private banks typically charge around $2,000 for the collection and around $200 a year for storage.

Anthony Nolan

Anthony Nolan is a UK charity that works in the areas of leukaemia and hematopoietic stem cell transplantation. It manages and recruits donors to the Anthony Nolan Register, which is part of an aligned registry that also includes the Welsh Bone Marrow Donor Registry, NHS Blood and Transplant's British Bone Marrow Registry and Deutsche KnochenMarkSpenderdate(DKMS) UK. This aligned register is known as the Anthony Nolan & NHS Stem Cell Registry. It also carries out research to help make bone marrow transplants more effective.

Cell therapy Therapy in which cellular material is injected into a patient

Cell therapy is a therapy in which viable cells are injected, grafted or implanted into a patient in order to effectuate a medicinal effect, for example, by transplanting T-cells capable of fighting cancer cells via cell-mediated immunity in the course of immunotherapy, or grafting stem cells to regenerate diseased tissues.

Cord blood is blood that remains in the placenta and in the attached umbilical cord after childbirth. Cord blood is collected because it contains stem cells, which can be used to treat hematopoietic and genetic disorders such as cancer.

The Singapore Cord Blood Bank is Singapore's only public cord blood bank that collects, processes and stores donated umbilical cord blood for use in stem cell transplants. Its cord blood units may be searched for use by qualifying transplant centers around the world.

Jay Feinberg American not-for-profit executive

Jay Feinberg is a long-term leukemia survivor, community organizer and founder and current CEO of the Gift of Life Marrow Registry.

World Marrow Donor Association (WMDA) is an organization based in Leiden, Netherlands, that coordinates the collection of the HLA phenotypes and other relevant data of volunteer hematopoietic cell donors and cord blood units across the globe.

Pablo Rubinstein is a pioneer in freezing of umbilical cord blood or placental blood cells for the use for unrelated donors to treat diseases like leukemia and genetic diseases such as Tay–Sachs disease and sickle cell anemia. He pioneered and established an international cord blood banking system and has played a leading role in international cord blood transplantation.

The Center for International Blood & Marrow Transplant Research, or CIBMTR, is a research facility that focuses on hematopoietic cell transplantation and cellular therapy research. The center operates a combined research program of the National Marrow Donor Program and the Medical College of Wisconsin.

Peripheral stem cell transplantation

Peripheral blood stem cell transplantation (PBSCT), also called "Peripheral stem cell support", is a method of replacing blood-forming stem cells. Stem cells can be destroyed through cancer treatments such as chemotherapy or radiation, as well as and blood-related diseases, such as leukemia, lymphoma, neuroblastoma and multiple myeloma. PBSCT is now a much more common procedure than its bone marrow harvest equivalent due to the ease and less invasive nature of the procedure. Studies suggest that PBSCT has a better outcome in terms of the number of hematopoietic stem cell yield.

Gift of Life Marrow Registry

The Gift of Life Marrow Registry is a public bone marrow and blood stem cell registry headquartered in Boca Raton, Florida. Gift of Life facilitates transplants for children and adults suffering from life-threatening illnesses, including leukemia, lymphoma, other cancers and genetic diseases.

Reticular dysgenesis

Reticular dysgenesis (RD) is a rare, inherited autosomal recessive disease that results in immunodeficiency. Individuals with RD have mutations in both copies of the AK2 gene. Mutations in this gene lead to absence of AK2 protein. AK2 protein allows hematopoietic stem cells to differentiate and proliferate. Hematopoietic stem cells give rise to blood cells.

Microtransplantation(MST) is an advanced technology to treat malignant hematological diseases and tumors by infusing patients with granulocyte colony-stimulating factor (G-CSF) mobilized human leukocyte antigen (HLA)-mismatched allogeneic peripheral blood stem cells following a reduced-intensity chemotherapy or targeted therapy. The term "microtransplantation" comes from its mechanism of reaching donor cell microchimerism. Chemotherapy is used by lower doses only to destroy cancer and partially suppress patient’s immune system, which will be reinitiated by donor’s stem cells soon after transplantation, and will play a role as recipient-versus-tumor (RVT) effect combining donor cells’ graft-versus-tumor (GVT) effect. Donor’s stem cells, which have been processed, will also accelerate functional recovery of recipient’s hematopoietic stem cells, greatly reducing infections and transplant-related mortality. Practices of microtransplantation has shown none graft-versus-host disease (GVHD) till present, thus immunosuppressive drugs for relieving GVHD wouldn't be necessary. Possible mechanisms of the successful avoidance of GVHD include donor cell microchimerism, less-toxic cells processed prior to transplantation, and the preservation of host immune system that is capable of resisting the GVH alloresponse. Moreover, as HLA-mismatched stem cells are employed, donor availability is extremely extended.

Guo Mei is a hematologist and associate director of 307th Hospital of Chinese People’s Liberation Army and deputy director of Radiation Research Institute.

DKMS is an international nonprofit bone marrow donor center based in Tübingen, Germany, with entities in the US, UK, Chile, Poland, India and South Africa. DKMS works in the areas of blood cancer and hematopoietic stem cell transplantation and raises awareness of the need for donors for hematopoietic stem cell transplantation which people with blood cancers need for treatment as well as helping people sign up to their national bone marrow registries. Over the years, DKMS has expanded beyond Germany.

Amal Bishara is an Israeli Arab doctor, and the director of Bone Marrow Registry Outreach, Hadassah Medical Center, which is associated with the Hebrew University of Jerusalem in Israel. There she runs the only bone marrow transplant registry in the world for unrelated Arab donors. Dr. Amal has published and presented internationally on her research into immunogenetics. She serves on the Accreditation Committee of the European Federation for Immunogenetics.

DATRI Nonprofit organization for blood stem cell donation in India

DATRI is a not-for-profit organization registered in 2009 as a Section 8 company under the Government of India. DATRI is the nation's largest unrelated blood stem cell donors registry, which helps patients with blood cancer and other fatal blood disorders to find an HLA matched donor to undergo Blood Stem Cell Transplant. Blood stem cell transplant is a chance of cure for patients suffering from blood cancer and other severe blood disorders. As of September 2019, DATRI has more than 4.6 lakhs voluntary donors registered and it has facilitated 728 transplants worldwide. DATRI operates in 10 major cities in India.

References

  1. "Pre-Transplant Phase_Riley Hospital for Children" (PDF).
  2. "Past, present and future of the National Marrow Donor Program" (PDF).
  3. "Donating Bone Marrow Is Easy and Important: Here's Why". Cancer.Net. 2017-01-05. Retrieved 2019-11-20.
  4. Dehn, Jason; Spellman, Stephen; Hurley, Carolyn K.; Shaw, Bronwen E.; Barker, Juliet N.; Burns, Linda J.; Confer, Dennis L.; Eapen, Mary; Fernandez-Vina, Marcelo; Hartzman, Robert; Maiers, Martin (2019-09-19). "Selection of unrelated donors and cord blood units for hematopoietic cell transplantation: guidelines from the NMDP/CIBMTR". Blood. 134 (12): 924–934. doi:10.1182/blood.2019001212. ISSN   0006-4971. PMC   6753623 . PMID   31292117.
  5. "D. Confer and P. Robinett: The US National Marrow Donor Program" (PDF).
  6. Hayat, M.A. (2012). Stem Cells and Cancer Stem Cells (Vol. 8). p. 330.
  7. All registry and cord blood figures obtained from the Bone Marrow Donors Worldwide Web site, accessed 25 January 2007.
  8. "Cancer battle spurs entrepreneur to start donor registry". Reuters. 2011-07-13. Retrieved 2019-11-20.
  9. Stone, Judy. "What You Need To Know On World Bone Marrow Day". Forbes. Retrieved 2019-11-20.
  10. https://www.giftoflife.org/page/content/aboutus Retrieved 2020-06-30
  11. "Gift of Life WMDA Accreditation" . Retrieved 2020-08-27.
  12. Information on the National Bone Marrow Donor Registry Assessment, 2004 [ dead link ], from ExpectMore.gov. Accessed 21 November 2006.
  13. 1 2 Bone Marrow Transplants--Despite Recruitment Successes, National Program May Be Underutilized, report by the GAO, October 2002
  14. Bone Marrow/Stem Cell Transplants (BMT), from Ped-Onc Resource Center. Accessed 21 November 2006