The National Marrow Donor Program (NMDP) is a non-profit organization that operates the Be The Match Registry, a database of potential volunteer blood stem cell donors and cord blood units. The organization serves as a central hub, connecting patients worldwide who have life-threatening blood disorders with unrelated donors for potentially curative transplants. The registry is recognized as the largest and most diverse of its kind, listing over 22 million individuals and hundreds of thousands of cord blood units. Its purpose is to manage the complex process of finding, matching, and facilitating the donation of healthy blood-forming cells for patients needing life-saving cellular therapy.
The Core Mission of Be The Match
The necessity for a public registry stems from the complex biology of the human immune system, specifically Human Leukocyte Antigen (HLA) typing. HLA markers are proteins inherited from both parents that must be closely matched between a patient and a donor to prevent the patient’s body from rejecting the transplant. Only about 30% of patients who require a transplant find a suitable HLA match within their immediate family, meaning the vast majority must rely on an unrelated donor found through the registry.
The cells provided by donors are used to treat over 75 different diseases, including life-threatening conditions like leukemia, lymphoma, and other blood cancers. Transplants are also a treatment option for non-malignant disorders such as severe aplastic anemia, sickle cell disease, and certain inherited immune system or metabolic disorders. Because HLA markers are inherited, a patient is most likely to match a donor who shares a similar ethnic or racial background. The organization is committed to building a diverse registry to ensure that every patient, regardless of their heritage, has the best possible chance of finding a genetic match.
Eligibility and Joining the Donor Registry
Joining the Be The Match Registry is a voluntary commitment to be available to any patient in the world who may be a genetic match. The organization focuses on recruiting new members between the ages of 18 and 35 because medical research indicates that cells from younger donors lead to better long-term success rates for patients. Individuals can remain on the registry as a potential donor until they reach the age of 61, provided they continue to meet the organization’s general health guidelines.
The first step to joining is a simple registration process that requires completing a consent form and a health history questionnaire. Once accepted, the new member receives a cheek swab kit by mail, which is used to collect cells for initial HLA typing. This simple, non-invasive method allows laboratory technicians to analyze the individual’s genetic markers and add the tissue type to the global database of potential donors.
The decision to join is viewed as a serious commitment, as the search process is complex and time-sensitive. Registry members must agree to keep their contact information and health status updated and be ready to move forward quickly if they are identified as a match for a searching patient. While a donor always has the right to change their mind, they are strongly encouraged to consider the implications of withdrawing after a patient has begun preparation for a transplant.
The Two Types of Donation Procedures
Once a donor is confirmed as the best match for a patient, the blood-forming cells are collected using one of two distinct medical procedures.
Peripheral Blood Stem Cell (PBSC) Donation
PBSC donation is the most common method, used in about 90% of donations. This is an outpatient, non-surgical process similar to donating platelets. It involves apheresis, where a donor’s blood is drawn from one arm, circulated through a machine to filter out the stem cells, and then returned to the donor through the other arm.
For five days leading up to the PBSC donation, the donor receives daily injections of a medication called filgrastim. This growth factor stimulates hematopoietic stem cells to move from the bone marrow and circulate in the peripheral bloodstream, making them accessible for collection. The apheresis procedure typically takes between four and eight hours and may occasionally require a second session to collect the necessary number of cells. Common side effects during the filgrastim injections include mild flu-like symptoms, such as bone or muscle aches, which subside shortly after the donation is complete.
Bone Marrow Donation
Bone Marrow Donation is a surgical procedure used in approximately 10% of cases, performed in a hospital setting. The donor is given general or regional anesthesia so they are completely unconscious and feel no pain during the collection. Doctors use sterile needles to withdraw liquid marrow directly from the back of the donor’s pelvic bone, which is a rich source of blood-forming stem cells.
The procedure itself usually takes about one to two hours, and most donors are able to go home the same day or the following morning. Recovery time for a bone marrow donor is generally short, with most people returning to their regular activities within two to seven days. The most common side effects are temporary soreness or bruising in the lower back or hips, along with some fatigue, as the body naturally replaces the donated marrow within a few weeks.
Beyond the Registry Patient Services
The NMDP’s work extends beyond simply maintaining the donor registry and facilitating the collection process. The organization provides comprehensive support services for patients and their caregivers, offering guidance and education throughout the complex journey from diagnosis through recovery. Dedicated patient engagement teams offer telephone counseling, one-on-one navigation, and educational resources like the Peer Connect Program, which links patients with others who have been through the transplant process.
A significant portion of the organization’s resources is dedicated to patient financial assistance, helping to alleviate the substantial non-medical costs associated with a transplant. These programs offer various grants to cover expenses such as transportation to and from the clinic, prescription co-pays, temporary housing, and lost wages for caregivers. Furthermore, the NMDP funds extensive research, often involving hundreds of ongoing clinical trials and studies aimed at improving transplant outcomes, reducing complications, and developing new cellular therapies for blood disorders.