Donor or Cord Blood Unit Search Process
Physicians can search the Be The Match Registry® for an unrelated donor or cord blood unit on behalf of their patients needing hematopoietic cell transplantation (HCT). Our registry lists nearly 16 million potential donors and nearly 238,000 umbilical cord blood units. Through international connections, we have access to nearly 29 million potential donors and more than 712,000 cord blood units.
About 70 percent of patients in need of a transplant do not have a fully HLA-matched donor in their family. They depend on the Be The Match Registry to find an unrelated donor or umbilical cord blood unit. Because appropriate planning and early donor identification are critical for optimal outcomes, early consultation for transplant is appropriate, even for patients who may never need HCT.
The process of conducting a search of the Be The Match Registry is outlined below, from tissue typing a patient to collecting hematopoietic cells for transplantation.
Tissue Typing the Patient
The National Marrow Donor Program® (NMDP)/Be The Match® recommends that a patient's human leukocyte antigen (HLA) typing be performed at high resolution (results reported at 4 digits) for HLA-A, -B, -C and -DR loci using molecular (DNA) testing. High-resolution typing of the patient soon after diagnosis is the key to an effective and efficient search process.
Should HCT be indicated, having high-resolution tissue typing information available enables a transplant center to select the best-matched donor or cord blood unit, and can reduce total search time and costs.
Tissue Typing Family Members
The patient's full biological siblings should be HLA tissue typed to identify potential related donors. For some patients, tissue typing the patient's parents and/or children can provide additional information that can be useful in developing a donor search strategy.
Initiating a Free Preliminary Search
Any physician can complete a Preliminary Search Request Form to find out about potentially matched marrow or peripheral blood stem cell (PBSC) donors or cord blood units (CBU) on the Be The Match Registry. A preliminary search is a single "snapshot" of potential matches at a given time and does not include contact with or additional testing of a potential donor. This preliminary search does not include searching international registries that are affiliated with NMDP/Be The Match. Network transplant center's search will include all available options.
Early preliminary searches can indicate how challenging the patient's search for a donor or CBU may be and help in shaping the treatment plan. If the preliminary search yields a list of potential donors or CBUs, a formal search conducted by an NMDP/Be The Match transplant center is still necessary to select the best match from among the potential choices as well as confirm availability of potential donors.
The likelihood of finding a match varies by individual based on their tissue type. A person's tissue type may be common, uncommon, or rare. Tissue types are inherited, so patients are most likely to match the tissue type of someone who shares their ethnic background.
Starting a Formal Search
If an unrelated donor or cord blood unit from the Be The Match Registry will be needed, the patient must be referred to a transplant center in the NMDP/Be The Match network. NMDP transplant centers meet and maintain NMDP/Be The Match participation criteria for quality and experience with allogeneic transplant. Only network transplant centers can initiate a formal search of the Be The Match Registry, which identifies one or more potential donors or cord blood units for a patient.
Early referral to a transplant center, even as other treatment is planned or initiated, can speed the process, if a transplant is required.
Formal Search Process
To identify a donor or cord blood unit for a patient, an NMDP/Be The Match transplant center requests a formal search. The NMDP/Be The Match manages the formal search process and can provide HLA expertise as well as support services for patients, physicians, and the transplant center team throughout the process.
The formal search begins when a network transplant center selects potential donors and/or CBUs for testing on behalf of a patient. Further confirmatory testing is needed to:
- Determine whether potential donors or CBUs are matched at the level of resolution and at all HLA loci required by the transplant center's protocol
- Confirm the original tissue typing. For a potential marrow or PBSC donor, this requires a fresh blood sample
Identifying Potential Donors or CBUs
The NMDP/Be The Match process of identifying an unrelated donor or cord blood unit is designed to provide a high quality of donated hematopoietic cells for transplant with minimal risk to the patient or donor.
Potential marrow or PBSC donors are educated about the donation process, screened for any health problems, and asked to confirm their availability and commitment to donation.
The factors that can affect the time needed to find a donor/CBU include:
- When and whether transplant becomes a potential treatment
- Urgency of patient's condition
- Quality of the patient's initial HLA typing: high-resolution typing enables an efficient search
- Challenge of the search: rarity of the patient's HLA type, the need for additional strategy, and requests for further donor testing
- Availability of cord blood unit(s)
- Scheduling of donor appointments for testing, education, and physical exams
Once an HLA match is found, it must be determined if the donor is available to donate. There are several reasons why donors might not be available, including:
- Change of health (medical issues that may make them medically unsuitable, including recent surgery, illness, some infections, and pregnancy)
- Change of address (cannot be located, despite considerable effort)
- Change of circumstances (not able or willing to donate)
The NMDP/Be The Match supports potential donors on its registry through education and assistance to maximize the chances they will be willing and able to donate if asked. This support includes:
- Providing information about potential complications and help if they occur
- Finding answers to donor insurance questions
- Overcoming financial and other barriers to donation (keep in mind, a donor or his or her insurance is never charged to donate)
- Providing assistance and information for paid time off to donate
Scheduling a Transplant/Collecting Cells
To facilitate the transplant, the NMDP/Be The Match:
- Ensures the quality of the cells provided for transplant through a through system of checks and balances and the standards it sets for its network centers
- Works with the transplant center and donor center or cord blood bank to establish a transplant date
- For marrow or PBSC transplants, manages all logistics of scheduling the collection and arranges transportation of the cells by courier to the transplant center
- For cord blood transplants, manages logistics to arrange shipment of the cyropreserved CBU to the transplant center
The NMDP/Be The Match ensures the safety and privacy of both donors and recipients by following strict internal standards, plus all applicable regulations from governmental agencies such as the United States Food and Drug Administration and the Department of Health and Human Services. In addition, we follow international consensus guidelines set by the World Marrow Donor Association (WMDA) and the Worldwide Network for Blood & Marrow Transplantation (WBMT).