User:BeTheMatch

National Marrow Donor Program^®
Company type	Nonprofit
Industry	Health care
Founded	St. Paul, Minnesota, USA (1986)
Headquarters	Minneapolis, Minnesota, USA
Key people	Jeff Chell, M.D., Chief Executive Officer; Dennis L. Confer, M.D., Chief Medical Officer; Michael Boo, J.D. Chief Strategy Officer, National Marrow Donor Program (2001-present); Amy Ronneberg, Chief Financial Officer, National Marrow Donor Program (2013-present); Michael Jones, MBA, Chief Information Officer, National Marrow Donor Program (2007-present); Christine Fleming, President, Be The Match Foundation
Number of employees	652 (April 2009)
Website	www.BeTheMatch.orgwww.marrow.org

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Be The Match, operated by National Marrow Donor Program^® (NMDP), is a nonprofit organization founded in 1986 and based in Minneapolis, Minnesota. As a leader in the field of marrow and cord blood transplantation, NMDP connects patients, doctors, donors and researchers to the resources they need. To help people of every racial and ethnic background live longer, healthier lives, the organization:

Offer people the unique opportunity to save a life through Be The Match
Add more members and donated umbilical cord blood to Be The Match Registry every day
Support patients with resources and services to reduce barriers to transplant and improve their quality of life after transplant
Educate doctors about transplant advances and patient care post transplant
Conduct and support cutting-edge research to advance the science of transplant
Help any eligible family who may benefit from a related donor cord blood transplant
Develop innovative tools, systems and services to continue to increase the number of patients served that operates the Be The Match Registry^® of volunteer hematopoietic cell donors and umbilical cord blood units in the United States.

Be The Match Registry is the world's largest marrow donor and cord blood unit registry, with more than 8 million donors and more than 160,000 searchable cord blood units, it is the largest and most racially and ethnically diverse registry of its kind in the world. Cells from these 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 38,000 transplants worldwide.

What the NMDP does

The NMDP coordinates the collection of hematopoietic ("blood-forming") cells that are used to perform a hematopoietic cell transplant, which is commonly referred to as a bone marrow transplant. Patients who need 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, sickle cell 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, 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.

About Be The Match

The National Marrow Donor Program (NMDP) introduced Be The Match^® in April 2009^[1] to engage a growing community of people inspired and committed to help patients in any way they can - by joining the registry, donating umbilical cord blood, contributing financially or getting involved.

The NMDP conducted extensive research to gain a better understanding of the general awareness of the organization and the public's willingness to help patients in need. Based on these research insights, Be The Match was developed to better engage the public. The Be The Match logo was designed with the patient at its center and represents the coming together of many, including health care professionals, donors, financial contributors and volunteers, to support patients.

The launch of Be The Match included national and local public outreach efforts including events, targeted advertising, social media activities and a redesigned Web site BeTheMatch.org. As part of the launch, the NMDP also increased communications with registry members to help build a greater sense of community, participation and purpose.

The National Marrow Donor Program will remain the name for the organization that operates the Be The Match Registry and partners with a global network of leading hospitals, blood centers, cord blood banks, laboratories and recruiters. As a leader in the field of bone marrow and cord blood transplantation, the NMDP will continue to facilitate transplants worldwide, conduct research to improve survival and quality of life, and provide education and support services to health care professionals and patients.

About Be The Match Registry

Be The Match Registry^SM is the new name for the registry operated by the National Marrow Donor Program^® (NMDP). The registry offers people the unique opportunity to help a patient by donating bone marrow or umbilical cord blood. Thousands of patients with leukemia and other life-threatening diseases depend on the Be The Match Registry to find a match.

A patient's doctor can contact the NMDP to search the Be The Match Registry and other registries worldwide to access more than 12 million donors and 300,000 umbilical cord blood units.

If someone has already joined the NMDP Registry, they are a member of the Be The Match Registry and do not need to join again.

How cells are collected

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 donors

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 matched donor among their family members.

For the remaining 70%, an unrelated hematopoietic cell donor is required in order to receive a transplant. For a successful transplant, a patient needs a matching donor. Testing for specific human leukocyte antigens (HLA) determine whether a patient and a bone marrow donor or umbilical cord blood unit are a good match. A close HLA match between patient and donor is the most important factor in selecting the best donor for a patient

Because HLA markers are inherited, patients are more likely to match someone from their own race or ethnicity. Adding more donors and cord blood units from diverse racial and ethnic backgrounds to the Be The Match Registry increases the likelihood that all patients will find the match they need.

How NMDP facilitates transplants

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, a cheek swab or blood sample is tested to determine his or her HLA and this 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 nearly 160,000 cord blood units listed by HLA type on its Be The Match Registry. These cord blood units are stored at 26 cord blood banks around the world that are affiliated with the NMDP.

How donors and patients are matched

Physicians can search the Be The Match Registry on behalf of a patient who needs a transplant by submitting the patient’s HLA type to the NMDP, which then searches its computerized database for an HLA-matched adult donor (marrow or PBSC) or cord blood unit.

If a match is made with an adult donor, the NMDP notifies him or her that a match has been made with a patient. After this 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 waiting patient.

If a match is made with a cord blood unit, the NMDP notifies the cord blood bank where the unit is stored and makes arrangements to transport it to the waiting patient. Cord blood units are shipped frozen, in specially designed coolers, and are thawed after arrival at the patient's hospital.

Whether an adult donor (marrow or PBSC) or cord blood is used for a transplant depends on several clinical factors that are evaluated by the transplant physician treating a patient.

International connections

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 12 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 51 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 operates the sole federally funded and Congressionally authorized stem cell registry in the United States, three other smaller registries exist.^[2]

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 120,000 volunteer donors and has access to approximately 1,000 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.

Finances

The NMDP receives annually about US$ 25 million from the US government through the Health Resources and Services Administration. The US Navy also provides some funding.^[3]

The program also receives income from financial contributions, 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 donor 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.^[4] (The final cost to the patient or his/her insurance company for the completed transplant can range from $100,000 to $250,000.^[5])

The NMDP pays affiliated donor centers and recruitment groups for every new donor they sign up.^[4]

About Be The Match Foundation

Be The Match recruits volunteers and raises money through the Be The Match Foundation^® the NMDP's fundraising partner.

Thousands of patients with leukemia and other life-threatening diseases depend on Be The Match Foundation to raise funds to support the work of the National Marrow Donor Program^® (NMDP). Be The Match uses the financial contributions to:

Grow the Be The Match Registry
Provide financial assistance to help patients throughout their transplant journey
Advance medical discovery to help patients live longer, healthier lives

How to Get Involved

Visit Be The Match.org to learn more about the many ways to get involved. There are several ways to help support patients:

References

^ NMDP Official Press Release: NMDP Renames Registry Be The Match
^ [1] 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.
^ ^a ^b 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

External links

www.marrow.org, official site of the National Marrow Donor Program
About Be The Match
About the Be The Match Foundation

[1] NMDP Official Press Release: NMDP Renames Registry Be The Match

[2] [1] All registry and cord blood figures obtained from the Bone Marrow Donors Worldwide Web site, accessed 25 January, 2007.

[3] Information on the National Bone Marrow Donor Registry Assessment, 2004, from ExpectMore.gov. Accessed 21 November 2006.

[gao-4] Bone Marrow Transplants--Despite Recruitment Successes, National Program May Be Underutilized, report by the GAO, October 2002

[5] Bone Marrow/Stem Cell Transplants (BMT), from Ped-Onc Resource Center. Accessed 21 November 2006

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