Steps of the Search Process
A bone marrow or cord blood transplant (also called a BMT) that uses blood-forming cells from a donor or cord blood unit is called an allogeneic transplant. If you need an allogeneic transplant, your doctor will look first for a donor in your family. Each brother and sister who has the same parents as you has a 25% chance of matching you.
However, 70% of patients do not have a suitable donor in their family. If you do not have a donor in your family, your doctor can search the National Marrow Donor Program (NMDP) Registry for an unrelated donor or cord blood unit for you.
1. Referring the patient to an NMDP transplant center
2. Tissue typing the patient
3. Tissue typing family members
4. Initiating a free preliminary search
5. Identifying a donor or cord blood unit for transplant
6. Scheduling a transplant and collecting the cells for transplant
1. Referring the patient to an NMDP transplant center
Consultation with a transplant physician and/or patient referral to a transplant center is recommended for patients diagnosed with a disease for which transplant is a potential treatment. Early referral, even as other treatment is planned or initiated, can improve the chances of success if transplant is required.
If an unrelated donor or cord blood unit from the NMDP Registry will be needed, The Icla da Silva Foundation can refer the patient to a transplant center in the NMDP Network. The Icla da Silva Foundation specialists can find a transplant centers that meet and maintain NMDP participation criteria for quality and experience with allogeneic transplant.
Referring physicians are welcome to consult by telephone with transplant physicians about a patient's treatment options or the best time for referral. The Icla da Silva Foundation Office can assist with locating a transplant center. Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
Timing: Preferably soon after diagnosis, depending on a patient's diagnosis and prognostic factors. The treating physician may carry out steps 2 - 4 below. An NMDP transplant center is responsible for selecting the donor or cord blood unit (step 5).
Responsibility: Referring physician.
Further information please Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
2. Tissue typing the patient
The NMDP 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 from the beginning is the key to an effective search process. Because the search strategy is based on complete patient information, beginning with high resolution patient typing not only enables a transplant center to select the best-matched donor or cord blood unit, but also can reduce total search time and costs.
Timing: Soon after diagnosis.
Responsibility: Either the transplant center or the referring physician. It may be more efficient and less costly if the transplant center performs the typing, because:
To ensure quality and consistency of results, the NMDP and nearly all transplant centers require the patient and potential donor or cord blood unit to be tested in the same laboratory. Some insurance companies cover the costs of tissue typing only when performed at a transplant center.
Further information please Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
3. Tissue typing family members
The patient's full biological siblings should be tissue typed to identify potential related donors. In addition, 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.
Timing: At the same time the patient is typed.
Responsibility: Either the referring physician or the transplant center. HLA expertise (available at many transplant centers and from the NMDP) is critical to ensure potential donors in the patient's family are not overlooked.
To request an HLA consultation from the NMDP, please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
4. Initiating a free preliminary search
Any physician can complete a Preliminary Search Request Form to find out about potential marrow or peripheral blood stem cell (PBSC) donors or cord blood units on the NMDP 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. Early preliminary searches can indicate how challenging the patient's search for a donor or cord blood unit may be and help in shaping the treatment plan.
When the preliminary search yields limited results, physicians are encouraged to consult a transplant physician or coordinator to discuss transplant options for the patient. The Icla da Silva Foundation team may be able to recommend a search strategy that will yield potential donors. Please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
If the preliminary search yields a list of potential donors or cord blood units, a formal search (step 5) is still necessary to select the best match as well as confirm availability of potential donors.
Timing: Can be done as soon as patient's tissue typing is complete, and can be repeated at any time. Search results are available to the requesting physician the next business day after the NMDP receives the request.
Responsibility: Either the referring physician or transplant center. If the patient is referred for transplant, the transplant center will do its own preliminary search. To initiate a preliminary search, complete a Preliminary Search Request Form.
patients and their families should be reminded that locating a donor or cord blood unit is the transplant center's responsibility. Though patient-sponsored donor drives may benefit other transplant patients over time, it is extremely unlikely that a patient will find a matched donor through his or her own efforts.
5. Identifying a donor or cord blood unit for transplant
To identify a donor or cord blood unit for the patient, an NMDP transplant center requests a formal search. The formal search begins when an NMDP transplant center selects potential donors and/or cord blood units for testing on behalf of a patient. Further testing is needed to:
Determine whether potential donors or cord blood units are matched at the level of resolution and at all HLA loci required by the transplant center's protocol.
Confirm the original typing. For a potential marrow or PBSC donor, this requires a fresh blood sample.
Potential marrow or PBSC donors are also educated about the donation process, screened for any health problems and asked to confirm their availability and commitment to donating. The NMDP 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.
Timing: Determined by the transplant physician in consultation with the referring physician based on the patient's diagnosis and treatment options. The time needed for a formal search varies greatly, depending on both patient and donor factors.
For a marrow or PBSC donor, the median time from initiation of the formal search to the request of a donor is 51 days.
For a cord blood unit, the average time from initiation of the formal search to the request for a cord blood unit is less than 2 weeks. The unit is typically shipped within 24 hours after being requested.
Factors that Affect Time to Find a Donor/Cord Blood Unit
When and whether transplant becomes a potential treatment. (For example, physicians may initiate a donor search as a backup plan for a CML patient being treated with imatinib.)
Urgency of patient's condition.
Quality of the patient's initial HLA typing — high resolution typing enables a more efficient search.
Challenge of the search — rarity of the patient's HLA type and the strategy for requesting further donor testing.
Whether cord blood is an option.
Scheduling of donor appointments for testing, education and physical exams.
Donors who are either permanently or temporarily unavailable. Although the majority of donors on the Registry are committed to donating if called upon, their participation is voluntary. Reasons donors could be unavailable include changes in health, personal situations, changes of heart about their commitment or changes in address that have made them difficult to locate.
Responsibility: The formal search is requested by an NMDP transplant center, which meets NMDP participation criteria for transplant experience and quality. The NMDP manages the search process and provides HLA expertise as well as support services for patients and their physicians throughout the process.
Further information: NMDP Transplant Centers, Key Roles in the Search Process (PDF), Likelihood of Finding an Unrelated Donor or Cord Blood Unit
6. Scheduling a transplant and collecting the cells for transplant
To facilitate the transplant, the The Icla da Silva through the NMDP:
Ensures the quality of the cells provided for transplant through a complex 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 the logistics of scheduling the collection and arranges transportation of the cells by courier to the transplant center
For cord blood transplants, arranges shipment of the cord blood unit to the transplant center
Timing: Scheduling of the transplant depends on the patient's condition and donor availability. Courier to the transplant center transports donated marrow or PBSC within 48 hours of donation. Cord blood units are typically shipped within 24 hours after being requested.
Responsibility: NMDP.
Selecting a Transplant Center
If you need a bone marrow or cord blood transplant and do not have a matching donor in your family, your doctor can search for an adult donor or cord blood unit for you on the National Marrow Donor Program (NMDP) Registry.
There are more than 120 NMDP transplant centers in the United States where you may be able to receive a transplant from an unrelated donor or cord blood unit on the NMDP Registry. NMDP compiles detailed information to help you and your doctors choose the transplant center that is best for you — see U.S. NMDP transplant centers.
There are also many international NMDP transplant centers. For more information please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
However, 70% of patients do not have a suitable donor in their family. If you do not have a donor in your family, your doctor can search the National Marrow Donor Program (NMDP) Registry for an unrelated donor or cord blood unit for you.
1. Referring the patient to an NMDP transplant center
2. Tissue typing the patient
3. Tissue typing family members
4. Initiating a free preliminary search
5. Identifying a donor or cord blood unit for transplant
6. Scheduling a transplant and collecting the cells for transplant
1. Referring the patient to an NMDP transplant center
Consultation with a transplant physician and/or patient referral to a transplant center is recommended for patients diagnosed with a disease for which transplant is a potential treatment. Early referral, even as other treatment is planned or initiated, can improve the chances of success if transplant is required.
If an unrelated donor or cord blood unit from the NMDP Registry will be needed, The Icla da Silva Foundation can refer the patient to a transplant center in the NMDP Network. The Icla da Silva Foundation specialists can find a transplant centers that meet and maintain NMDP participation criteria for quality and experience with allogeneic transplant.
Referring physicians are welcome to consult by telephone with transplant physicians about a patient's treatment options or the best time for referral. The Icla da Silva Foundation Office can assist with locating a transplant center. Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
Timing: Preferably soon after diagnosis, depending on a patient's diagnosis and prognostic factors. The treating physician may carry out steps 2 - 4 below. An NMDP transplant center is responsible for selecting the donor or cord blood unit (step 5).
Responsibility: Referring physician.
Further information please Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
2. Tissue typing the patient
The NMDP 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 from the beginning is the key to an effective search process. Because the search strategy is based on complete patient information, beginning with high resolution patient typing not only enables a transplant center to select the best-matched donor or cord blood unit, but also can reduce total search time and costs.
Timing: Soon after diagnosis.
Responsibility: Either the transplant center or the referring physician. It may be more efficient and less costly if the transplant center performs the typing, because:
To ensure quality and consistency of results, the NMDP and nearly all transplant centers require the patient and potential donor or cord blood unit to be tested in the same laboratory. Some insurance companies cover the costs of tissue typing only when performed at a transplant center.
Further information please Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
3. Tissue typing family members
The patient's full biological siblings should be tissue typed to identify potential related donors. In addition, 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.
Timing: At the same time the patient is typed.
Responsibility: Either the referring physician or the transplant center. HLA expertise (available at many transplant centers and from the NMDP) is critical to ensure potential donors in the patient's family are not overlooked.
To request an HLA consultation from the NMDP, please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
4. Initiating a free preliminary search
Any physician can complete a Preliminary Search Request Form to find out about potential marrow or peripheral blood stem cell (PBSC) donors or cord blood units on the NMDP 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. Early preliminary searches can indicate how challenging the patient's search for a donor or cord blood unit may be and help in shaping the treatment plan.
When the preliminary search yields limited results, physicians are encouraged to consult a transplant physician or coordinator to discuss transplant options for the patient. The Icla da Silva Foundation team may be able to recommend a search strategy that will yield potential donors. Please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.
If the preliminary search yields a list of potential donors or cord blood units, a formal search (step 5) is still necessary to select the best match as well as confirm availability of potential donors.
Timing: Can be done as soon as patient's tissue typing is complete, and can be repeated at any time. Search results are available to the requesting physician the next business day after the NMDP receives the request.
Responsibility: Either the referring physician or transplant center. If the patient is referred for transplant, the transplant center will do its own preliminary search. To initiate a preliminary search, complete a Preliminary Search Request Form.
patients and their families should be reminded that locating a donor or cord blood unit is the transplant center's responsibility. Though patient-sponsored donor drives may benefit other transplant patients over time, it is extremely unlikely that a patient will find a matched donor through his or her own efforts.
5. Identifying a donor or cord blood unit for transplant
To identify a donor or cord blood unit for the patient, an NMDP transplant center requests a formal search. The formal search begins when an NMDP transplant center selects potential donors and/or cord blood units for testing on behalf of a patient. Further testing is needed to:
Determine whether potential donors or cord blood units are matched at the level of resolution and at all HLA loci required by the transplant center's protocol.
Confirm the original typing. For a potential marrow or PBSC donor, this requires a fresh blood sample.
Potential marrow or PBSC donors are also educated about the donation process, screened for any health problems and asked to confirm their availability and commitment to donating. The NMDP 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.
Timing: Determined by the transplant physician in consultation with the referring physician based on the patient's diagnosis and treatment options. The time needed for a formal search varies greatly, depending on both patient and donor factors.
For a marrow or PBSC donor, the median time from initiation of the formal search to the request of a donor is 51 days.
For a cord blood unit, the average time from initiation of the formal search to the request for a cord blood unit is less than 2 weeks. The unit is typically shipped within 24 hours after being requested.
Factors that Affect Time to Find a Donor/Cord Blood Unit
When and whether transplant becomes a potential treatment. (For example, physicians may initiate a donor search as a backup plan for a CML patient being treated with imatinib.)
Urgency of patient's condition.
Quality of the patient's initial HLA typing — high resolution typing enables a more efficient search.
Challenge of the search — rarity of the patient's HLA type and the strategy for requesting further donor testing.
Whether cord blood is an option.
Scheduling of donor appointments for testing, education and physical exams.
Donors who are either permanently or temporarily unavailable. Although the majority of donors on the Registry are committed to donating if called upon, their participation is voluntary. Reasons donors could be unavailable include changes in health, personal situations, changes of heart about their commitment or changes in address that have made them difficult to locate.
Responsibility: The formal search is requested by an NMDP transplant center, which meets NMDP participation criteria for transplant experience and quality. The NMDP manages the search process and provides HLA expertise as well as support services for patients and their physicians throughout the process.
Further information: NMDP Transplant Centers, Key Roles in the Search Process (PDF), Likelihood of Finding an Unrelated Donor or Cord Blood Unit
6. Scheduling a transplant and collecting the cells for transplant
To facilitate the transplant, the The Icla da Silva through the NMDP:
Ensures the quality of the cells provided for transplant through a complex 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 the logistics of scheduling the collection and arranges transportation of the cells by courier to the transplant center
For cord blood transplants, arranges shipment of the cord blood unit to the transplant center
Timing: Scheduling of the transplant depends on the patient's condition and donor availability. Courier to the transplant center transports donated marrow or PBSC within 48 hours of donation. Cord blood units are typically shipped within 24 hours after being requested.
Responsibility: NMDP.
Selecting a Transplant Center
If you need a bone marrow or cord blood transplant and do not have a matching donor in your family, your doctor can search for an adult donor or cord blood unit for you on the National Marrow Donor Program (NMDP) Registry.
There are more than 120 NMDP transplant centers in the United States where you may be able to receive a transplant from an unrelated donor or cord blood unit on the NMDP Registry. NMDP compiles detailed information to help you and your doctors choose the transplant center that is best for you — see U.S. NMDP transplant centers.
There are also many international NMDP transplant centers. For more information please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.