Frequently Asked Questions (FAQ)

Each year, approximately 18,000 people, age 0 - 74 years, might benefit from a potentially life-saving bone marrow or umbilical cord blood transplant.

Estimates of 2022 population demographics were used to determine the number of people needing:

• Related allogeneic transplants (blood-forming cells donated from a family member)
• Unrelated allogeneic transplants (blood-forming cells donated from an unrelated donor or cord blood unit)

* Totals do not add up due to rounding or the way race vs. ethnicity and other/unknown/declined answers are counted.

* Totals do not add up due to rounding or the way race vs. ethnicity and other/unknown/declined answers are counted.

To learn more, see Learn About Transplant as a Treatment Option.

The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP^SM Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.

Nearly 23,000 bone marrow or umbilical cord blood transplants were performed in the United States in 2021.*

To view more data about transplants, see Donation and Transplantation Statistics for reports about patient survival and transplants using autologous, related allogeneic, and unrelated allogeneic donors. These reports use data from the transplant outcomes registry of the C.W. Bill Young Cell Transplantation Program, also called the Stem Cell Therapeutic Outcomes Database.

* These data are of transplants performed from January 1 - December 31, 2021. These data were reported to the Center for International Blood and Marrow Transplant Research® (CIBMTR) as of November 17, 2022.

As authorized by the Stem Cell Therapeutic and Research Act of 2005, Public Law 109-129, and reauthorized by Congress in 2010, 2015, and 2021 (P.L. 111-264, P.L. 114-104, and P.L. 117-15), the CIBMTR provides these data to the U.S. Health Resources and Services Administration as part of the Stem Cell Therapeutic Outcomes Database contract. U.S. transplant centers are required to report data to the CIBMTR for all patients who received a bone marrow, peripheral blood, or cord blood transplant from a related or unrelated donor. There are natural delays in collecting, validating and reporting data that result in these data being the year prior to Registry data.

**Many U.S. transplant centers voluntarily report autologous transplant data to the CIBMTR. Because these data are not required to be reported, this number represents only a portion of the actual autologous transplants performed.
 

Each year 18,000 people, ages 0-74, in the U.S. are diagnosed with life-threatening illnesses where a marrow or blood cell transplantation from a related or unrelated donor or cord blood unit is their best treatment option. These patients have leukemia, lymphoma, or other life-threatening diseases that can be treated by a bone marrow or umbilical cord blood transplant.

Most patients (about 70%) in need of a transplant do not have a fully matched donor in their family. They depend on the registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry^SM, to find an unrelated donor or cord blood unit.

Even with a registry of millions of donors and cord blood units, there are many patients who have a difficult time finding a match. NMDP works to increase the number and diversity of marrow donors and cord blood units on the registry so that patients needing a transplant can find a match. Donors of these backgrounds are especially needed:

• Black or African American
• American Indian or Alaska Native
• Asian
• Native Hawaiian or other Pacific Islander
• Hispanic or Latino

The NMDP Registry, is a listing of unrelated marrow donors and donated cord blood units. The registry is operated under federal contracts by the National Marrow Donor Program® d/b/a NMDP ^SM.

To learn more, see The Need for More Donors.

Racial and ethnic heritage are very important factors. Because tissue types are inherited, patients are most likely to match someone of their own race or ethnicity. Today, there aren't enough registered marrow donors of diverse racial and ethnic heritage. Adding more diverse donors increases the likelihood that all patients will find a life-saving match.

Donors of these backgrounds are especially needed:

• Black or African American
• American Indian or Alaska Native
• Asian
• Native Hawaiian or other Pacific Islander
• Hispanic or Latino
• Mixed heritage

To learn more, see The Need for More Donors.

Most patients diagnosed with leukemia, lymphoma, or other life-threatening diseases who need a transplant can be treated using umbilical cord blood. A cord blood transplant uses cells collected from the blood remaining in the umbilical cord and placenta after a baby is born. (These are not embryonic stem cells.)

Cord blood is especially useful when:

• There is no adult donor who is a close match for a patient including patients from diverse racial or ethnic backgrounds who may have a difficult time finding a suitable match. Patient outcomes are improved when the cells for transplant closely match the patient. However, studies show that cord blood does not need to match as closely as bone marrow or peripheral blood for a successful transplant.
• A patient needs a transplant right away. Sometimes a patient can’t wait several weeks or months for a donor to be contacted and the marrow donation to be collected. Cord blood units are stored in a public cord blood bank and ready to use.

The patient’s doctor will decide if cord blood is the best cell source for the patient. However, not all transplant centers are able to do cord blood transplants.

Learn about:

• Diseases Treatable with a Bone Marrow Transplant or Cord Blood Transplant
• The Need for More Cord Blood Donations
   

For a successful transplant, the tissue type of an umbilical cord blood unit or a marrow donor needs to match the patient's as closely as possible. Tissue types are inherited, so patients are more likely to match someone who shares their racial or ethnic heritage. Patients from racially or ethnically diverse backgrounds often have a harder time finding a match.

Because studies show that cord blood may not need to match a patient as closely as donated bone marrow, cord blood transplants may offer hope to these patients. Many more patients could be helped if cord blood is donated, especially from these groups:

• Black and African American
• American Indian and Alaska Native
• Asian
• Hispanic and Latino
• Native Hawaiian and Other Pacific Islander
• Multiple race

For more information, see The Need for More Cord Blood Donations.
 

Strict confidentiality standards protecting the privacy of both the patient and the marrow donor are followed by the NMDP, which operates the NMDP Registry^SM. NMDP standards, the confidentiality guidelines of transplant centers and donor centers, and the laws in other countries might allow communication between the patient and the donor.

Considering the NMDP standards, the confidentiality guidelines of transplant centers and donor centers, and the laws and policies of other countries, these are the possibilities for communication between the patient and the donor:

• During the first year after the transplant, some centers allow anonymous communication. To view guidelines for anonymous contact, see Contact with Your Donor.
• After one or more years after the transplant, some centers allow direct contact if both the patient and donor have signed the appropriate consent forms. Other centers do not allow direct contact at any time.

The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.

Donating cord blood for public use or storing it for your family's private use is a personal choice. The umbilical cord and placenta are usually thrown away after the baby is born—unless the parents want to have the blood left in the umbilical cord and placenta collected. Choices may include:

• Donating it to a public cord blood bank. (If the cord blood cannot be used for transplant, it may be used for research studies or it will be thrown away.)
• Storing it in a family (private) cord blood bank
• Saving it for a biological sibling who has a diagnosed medical need

For more information to help you make an informed decision, see Options for Umbilical Cord Blood Banking and Donation.
 

The registry of the C.W. Bill Young Cell Transplantation Program (also called the NMDP Registry^SM) is focused on building an inventory of high-quality cord blood units that are from diverse racial and ethnic backgrounds. When a donated cord blood unit meets the standards for transplant, it will be tissue typed, frozen and stored in a liquid nitrogen freezer at a public cord blood bank. The cord blood unit is then listed on the registry, where it is available for searching patients.

Some transplant standards for donated cord blood are:

• The cord blood unit must be large enough (contain enough blood-forming cells) for a transplant.
• The mother's health history and the results of her blood sample test must meet eligibility guidelines.
• The cord blood unit must be free from contamination.
• The cord blood unit must arrive at the cord blood bank within a certain time limit for processing.

Not all cord blood units collected meet standards for transplant. Frequently, cord blood is not stored because there are not enough blood-forming cells or it took too long to be delivered to the cord blood bank for processing. Collected cord blood that does not meet standards for transplant may be used for research or thrown away. Cord blood will only be used for research with the parents’ permission.
 

If you decide to donate your baby's umbilical cord blood, a public cord blood bank staff who works with your hospital will ask you questions to make sure you can donate. The answers you give are used to make sure your blood is free from infectious diseases that can be given to another person. You can usually donate if you are:

• Healthy
• Pregnant with one baby (rather than two or more)

For basic donation guidelines, see Learn if You Can Donate Cord Blood. 
 

To donate cord blood to a public cord blood bank, talk with your doctor or midwife about your interest in donating and then call a cord blood bank to see if donation can be done at your delivery hospital. Ideally, you should call the cord blood bank between your 28th and 34th week of pregnancy.

After the birth of your baby, the umbilical cord and placenta are no longer needed. If you choose to donate, the blood left in the umbilical cord and placenta will be collected and tested. Cord blood that meets standards will be stored and available to searching patients. (It is not saved for your family.)

For detailed information, see Donating Umbilical Cord Blood to a Public Bank.
 

Check to see if your hospital works with a public cord blood bank to collect umbilical cord blood for public donation. Because of funding limitations, it is not possible to donate cord blood at every hospital at this time.

For a list of hospitals that work with public cord blood banks, see Participating Hospitals.  
 

Donating cord blood will not change your labor or delivery in any way. During delivery, all the focus is on you and your baby. No blood is taken from your baby, only from the cord and placenta after the baby is born.

Usually the day after your baby is born, you will be asked for a sample of your blood to be tested for infectious diseases. This blood is only taken from you, not your baby.
 

The cord blood bank keeps the mother's and baby's names private and it protects the privacy of the family. Names are not shared with any patient or transplant center. The cord blood is listed by a number, never by a name. Personal information is never exchanged between a cord blood donor and a cord blood transplant recipient.

There is no cost to you when you donate cord blood to a public cord blood bank. Public cord blood banks pay for everything which includes collecting, processing, and storing cord blood units. At this time, because of funding limitations, it is not possible to donate at every hospital.

Parents may also choose to store the umbilical cord blood for their own family. Family (private) cord blood banks are available throughout the country for anyone who chooses to pay the collection fee and annual fees for storing the cord blood.

If a biological sibling has a medical need, the collection and storage of cord blood is offered at little or no cost to eligible families.

For more information, see:

• Options for Umbilical Cord Blood Banking or Donation
• Donating Umbilical Cord Blood to a Public Bank
• Should I save my baby’s umbilical cord blood for a biological sibling?
• Help for Families in Need

Public cord blood banks work with their participating hospitals and doctors to provide information about donating umbilical cord blood to expectant parents.

You can also:

• Find Options for Umbilical Cord Blood Banking and Donation.
• Learn about the ease of Donating Umbilical Cord Blood.
• Find information about donating umbilical cord blood from the NMDP Registry^SM at 1-800-627-7692. (NMDP Registry is the registry for the C.W. Bill Young Cell Transplantation Program.)
   

Seeing the need to help more patients who need a bone marrow or umbilical cord blood transplant, the United States Congress passed the Stem Cell Therapeutic and Research Act of 2005, Public Law 109-129, and reauthorized by Congress in 2010, 2015, and 2021 (P.L. 111-264, P.L. 114-104, and P.L. 117-15). These acts include support for umbilical cord blood transplant and research.

To learn more about the Stem Cell Acts of 2005 and 2010, see: The Need for More Cord Blood Donations; National Cord Blood Inventory Contract Summary; Cord Blood Coordinating Center Contract Summary.
 

Donating cord blood for public use or storing it for your family's private use is a personal choice. The umbilical cord and placenta are usually thrown away after the baby is born—unless the parents want to have the blood left in the umbilical cord and placenta collected. 

Choices may include:

• Donating it to a public cord blood bank. (If the cord blood cannot be used for transplant, it may be used for research studies or it will be thrown away.)
• Storing it in a family (private) cord blood bank
• Saving it for a biological sibling who has a diagnosed medical need

For more information to help you make an informed decision, see Options for Umbilical Cord Blood Banking and Donation.

Becoming a donor requires a time commitment. Before you donate, there are several steps to make sure you are the best donor for the patient. These steps include an information session to provide resources to help you make your decision to donate, as well as appointments for additional blood tests and a physical exam. The amount of time for the actual donation depends on the donation procedure.

The typical time commitment for the donation process is 20-30 hours of your time spread out over a four-to six-week period. This does not include travel time, which is defined by air travel and staying overnight in a hotel. Most donors will travel during the donation process (donors will not be responsible for travel costs). Bone marrow and peripheral blood stem cell (PBSC) donation require about the same total time commitment.

To learn more, see Donating Marrow.
 

Donors on the registry* may be asked to donate bone marrow or PBSC for any patient in need.

• Bone marrow donation is a surgical procedure done under general or regional anesthesia in the hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone.
• PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of medications called filgrastims for five days leading up to the donation. These filgrastims increase the number of blood-forming cells in the bloodstream. Then, the cells are collected through a process called apheresis. During apheresis a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.

When you join the registry, you agree to donate by either method. The patient's doctor will ask for either bone marrow or PBSC, depending upon what's best for the patient.

Learn more about marrow and PBSC donation at Donating Marrow.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry^SM, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.
 

Peripheral blood stem cell (PBSC) donation is a way to collect blood-forming cells for transplantation. The same blood-forming cells (sometimes called blood stem cells) that can be donated from the bone marrow are also found in the circulating (peripheral) blood. Before donation, a donor takes injections of drugs called filgrastims to move more blood-forming cells out of the marrow and into the bloodstream. Then the donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm. This process is similar to donating plasma.

Learn more about PBSC donation  
 

Donating PBSC involves two steps: receiving injections of filgrastims and making the donation.

1. Receiving filgrastims injections: To move more blood-forming cells from your bone marrow to your bloodstream, you will receive filgrastims, a drug given by injection each day for five days before the donation. The first injection may be given at a donor center or medical clinic. You may receive injections on days two, three and four at your place of work, your home, at a donor center or at a medical clinic. On the fifth day, you will receive your final dose of filgrastims, and then donate your blood cells at the donor center or hospital outpatient unit.
2. Donating the cells: PBSC donation is done through a process called apheresis, which is similar to donating plasma. During apheresis, a needle will be placed into each of your arms. Blood will be removed from a vein in one arm and passed through tubing into a blood cell separator machine. The machine collects blood-forming cells, platelets and some white blood cells. Plasma and red blood cells are returned to your body through the other arm. All the tubing used in the machine is sterile and is used only once for your donation. If only one donation is done, it may take up to eight hours. If two donations are done on separate days, each collection will take four to six hours.

What is the PBSC donation process like video (scroll down to Donating PBSC section to view video)
 

The NMDP is studying peripheral blood stem cell (PBSC) donations under a clinical research study reported to the U.S. Food and Drug Administration (FDA). The study is investigating whether blood-forming cells from the peripheral blood can be used as effectively as blood-forming cells from bone marrow for unrelated donor transplantation. A clinical research study has a written set of instructions for how a donation will be carried out. It is an important scientific way to evaluate the PBSC donation process and the donated product's effectiveness.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry^SM, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP.
 

PBSC donors may experience headache or bone pain and muscle aches, similar to a cold or the flu, for several days before collection. These are side effects of filgrastims injections that disappear shortly after donation. Other common side effects are nausea, trouble sleeping, and tiredness. Less than 1 percent (0.6%) of donors experience serious side effects from filgrastims.

The PBSC donation procedure can also have side effects. Some donors experience tingling around the mouth, fingers and toes and mild muscle cramps. This is caused by the anti-coagulant (blood thinner) used in the apheresis procedure. These symptoms are easily treated with calcium replacement or by slowing down the procedure. Other common side effects include bruising at the needle site, chills and a decrease in the blood platelet count.
 

Yes, however, fewer than 1 percent of PBSC donors experience a serious side effect from the donation process.

PBSC donation may require placing a central venous line if you do not have suitable veins in your arm. A central line is a sterile tube that is inserted into one of the larger veins: the femoral vein, internal jugular vein, or subclavian vein. Based on the experience of the NMDP, 19 percent of women and 3 percent of men require a central line. The risk of serious complications from using a central line is small. A central line will be placed only with your consent after you have received information about the possible risks.

Another potential risk is associated with filgrastims injections. Though filgrastims are commonly used to treat cancer patients, using filgrastims in healthy donors is fairly new. Therefore, no data are yet available about the long-term safety. NMDP began using filgrastims to aid in transplants in the 1990s. Since then, no NMDP donors have reported any long-term complications from filgrastims injections.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.
 

The PBSC donation procedure is done in a blood center or hospital outpatient clinic.

Before the donation, you will receive five days of filgrastims injections. The first must be given at a donor center or medical clinic, and the fifth will be given at the location where you will undergo the donation procedure. The injections on days two through four may be given at your place of work, your home, at the donor center or a medical clinic.

As a donor on the NMDP Registry^SM*, you are covered by a donor life, disability, and medical insurance policy for complications directly related to your donation.

For your safety, the NMDP has extensive contracts with health care organizations and doctors who are experts in bone marrow, blood cell transplants, and medical care.

Learn about the Donor Advocacy Program.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.
 

Learn more about how to donate bone marrow or PBSC or read the marrow donation FAQs for more information.

Bone marrow donation is a surgical procedure that takes place in an operating room. The donation will be scheduled at a hospital that partners with NMDP. In some cases, the hospital may be near your home. In other cases, you may be asked to travel. Travel and other donation related expenses are covered.

What is the marrow donation process like video (scroll down to Donating Bone Marrow section to view video)
A representative from the NMDP Registry will guide you through the process and be available the day of your bone marrow donation.

• Hospital Stay: You will arrive at the hospital outpatient facility on the day of the donation. You will stay in the hospital usually from early morning to late afternoon, though some hospitals routinely plan for an overnight hospital stay.
• Anesthesia: You will be given anesthesia to block the pain during the marrow donation. If general anesthesia is used, you will be unconscious during the donation. If you receive regional anesthesia (either spinal or epidural), medication will block sensation in the affected area, but you will remain aware of your surroundings. General anesthesia is used for about 96% of NMDP marrow donors. The average time of anesthesia is less than 2 hours.
• Donation: During the bone marrow donation, you will be lying on your stomach. While the donation varies slightly from hospital to hospital, generally, the doctors use special, hollow needles to withdraw liquid marrow (where blood-forming cells are made) from both sides of the back of the pelvic bone through several (typically one to four) small incisions. The incisions are less than one-fourth inch long and do not require stitches.
• Recovery: Hospital staff will watch you closely until the anesthesia wears off, and continue to monitor your condition afterwards. Most donors go home the same day or the next morning. After you leave the hospital, a representative from the NMDP Registry will contact you on a regular basis to ask about your physical condition and any side effects you are experiencing. Most donors are back to their normal routine within several days.

Learn more about Donating Marrow.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.

Bone marrow donation is done under general or regional anesthesia so the donor experiences no pain during the donation procedure. Discomfort and side effects after the donation vary from person to person. Most marrow donors experience some side effects.

Common side effects of marrow donation include:

• Back or hip pain
• Fatigue
• Muscle pain
• Headache
• Bruising at the collection site

Some donors said the experience was more painful than they expected; others said it was less painful. Some donors describe the pain as similar to achy hip bones or falling on their buttocks. Others say it feels more like a strained muscle in the back. The ache may last a few days to several weeks.

Learn the Myths & Facts about Bone Marrow Donation  
 

The NMDP wants to assure donor safety, but no medical procedure is risk-free. The majority (more than 98.5%) of marrow donors feel completely recovered within a few weeks. A small percentage (2.4%) of donors experience a serious complication due to anesthesia or damage to bone, nerve, or muscle in their hip region.

The risk of side effects of anesthesia during bone marrow donation is similar to that during other surgical procedures. Serious side effects of anesthesia are rare. Common side effects of general anesthesia include sore throat (caused by the breathing tube) or mild nausea and vomiting. Common side effects of regional anesthesia are a decrease in blood pressure and a headache after the procedure.

NMDP and its centers take all the necessary precautions to ensure the safety and well-being of the donor.

To learn more, see donor safety and support.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.

The first step to becoming a marrow donor is to join the NMDP. The registry is a listing of potential marrow donors and donated umbilical cord blood units.

Doctors around the world search the registry to find an unrelated marrow donor or cord blood unit for their patients. If a doctor selects you as a match for a patient, you may be asked to donate bone marrow or cells from circulating blood (called PBSC donation). Patients need donors between the ages of 18 and 60 who meet health guidelines and are willing to donate to any patient in need.

To learn more, see Joining the registry.
 

When you join the registry*, you make a commitment to: 

• Be listed on the registry until your 61st birthday, unless you ask to be removed
• Donate to any searching patient who matches you
• Tell the NMDP Registry if your address changes, you have significant health changes, or you change your mind about being a donor
• Respond quickly if you are contacted as a potential match for a patient

Donating is always voluntary. You have the right to change your mind about being a donor at any time. However, please think seriously about your commitment before joining.

If you decide you do not want to donate, tell the NMDP Registry right away. That way, the search for another donor can continue without dangerous delays for the patient.

To tell the NMDP Registry^SM that your contact information has changed, your health has changed, or you no longer want to donate, you can either:

• Update your contact information online
• Contact the NMDP Registry at 1 (800) MARROW-2 (1-800-627-7692)

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.

Volunteer donors must be between the ages of 18 and 60. The NMDP Registry* focuses on recruiting new registry members ages 18 to 40. This is based on medical research that shows younger donors are best for patients and provide the greatest chance for transplant success.

Learn more about joining the registry 

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.

The first step to becoming a donor is to join a registry of potential marrow donors. If you do not live in the United States or Puerto Rico, contact an international registry that is near you.

• International donor centers working with the registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry^SM.
• Registries participating with the Bone Marrow Donors Worldwide  

To learn more, see Joining the registry.
 

The likelihood of matching a patient is difficult to predict because there is so much diversity of tissue types in the population. You are more likely to be selected if you are in the 18-35 age group. Doctors select donors in this age group 75% of the time because research shows cells from younger donors lead to more successful transplants.

Every person who joins the registry gives patients hope, and new patient searches begin every day. You may never be identified as a match for someone, or you might be one of a number of potential matches. But you may also be the only one on the registry who can save a particular patient's life.
 

Doctors look for a marrow donor or cord blood unit that matches the patient's tissue type, specifically the patient's human leukocyte antigen (HLA) tissue type.

HLA are proteins—or markers—found on most cells in your body. Your immune system uses these markers to recognize the cells that belong in your body and those that do not. The closer the match between the patient's and the donor's HLA markers, the better for the patient. Because tissue types are inherited, patients are most likely to match someone of their own race or ethnicity.

Learn more about Donating Bone Marrow and The Need for More Donors.
 

You will be contacted by a representative from the NMDP Registry^SM*, and asked if you are still interested in being a donor. If you agree, you will be asked to participate in more testing to see if you are the best possible match for the patient. (You may be asked for another blood or cheek swab sample, or the stored sample may be used.)

If you are selected as the best donor for the patient—and you agree to donate—the NMDP Registry will schedule an informational session. At this session you will learn more about the donation process, risks, and side effects. You can also find out the type of donation the patient's doctor has requested—either bone marrow or cells collected from the blood, called peripheral blood stem cell (PBSC) donation. Then, if you confirm your decision to donate, you will begin the donation process.

To learn more about the donation process, see Donating Marrow.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program® d/b/a NMDP^SM.

After joining the NMDP Registry^SM, you have the right to change your mind about being a donor at any time. Donating is always voluntary.

If you decide not to donate, tell the NMDP Registry immediately. NMDP will need to continue the search for another donor without dangerous—even life-threatening—delays for the patient.

To change your mind about donating, either:

• Change your current information at Update your contact information  
• Contact the NMDP Registry at 1 (800) MARROW-2 (1-800-627-7692)
   

To add your information to the registry:

• Get a copy of your human leukocyte antigen (HLA) tissue typing lab report.
• Contact the NMDP Registry by calling 1-800 MARROW-2. You will need to to fill out a health history form to verify you meet medical guidelines and sign a consent form agreeing to be listed on the registry.

After your tissue type is listed on the registry, you will be contacted if you are identified as a possible match for a patient.

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program d/b/a NMDP^SM.
 

NMDP Registry is the new name for the Be The Match/National Marrow Donor Program (NMDP) Registry. Whether you join the registry online or in person, you are part of the same registry* and do not need to join again.

If you have previously given a blood sample or cheek cell sample to be tested for the registry, you do not need to join again.

If you are unsure whether you joined the registry, call NMDP Registry at 1 (800) MARROW-2 (1-800-627-7692).

*The registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry, is a listing of potential marrow donors and donated cord blood units. The registry is operated under Federal contracts by the National Marrow Donor Program d/b/a NMDP^SM.

There are inherent delays in collecting, reporting, and analyzing data. To report on outcomes after a procedure, data must be collected for sufficient time in relation to the outcome. For example, the Center-Specific Survival Analysis evaluates survival at one year after allogeneic HCT at US centers. This means that all patients must have had the opportunity to have lived for at least one year following their transplant. Then the data must be collected, validated, analyzed, and approved—a process which will take approximately an additional year.

For longer-term survival estimates, greater follow-up time is needed. To provide a valid estimate of three-year survival, at least half of the patients in the dataset must have had the opportunity to have lived for at least three years following their transplant. For example, to report on three-year survival statistics in 2018, at least half of included patients must have received their transplant before 2015.
 

In most diseases, there are too few patients transplanted with any given disease at a single center to allow calculation of statistically meaningful survival data. Transplant is still a relatively rare procedure. For many diseases, there are fewer than 100 patients transplanted each year. When these small numbers are spread across more than 200 transplant centers, the number of patients transplanted at most centers is too small to accurately predict outcomes for patients with a particular disease at a specific center.

The Center for International Blood and Marrow Transplant Research^® (CIBMTR^®) must also be aware of patient confidentiality when providing outcomes data for specific diseases at specific transplant centers. For some diseases that are very rare, there may be only one patient who receives a transplant at a center. Providing outcomes data for such diseases could potentially reveal patient-sensitive information.

Transplant data are reported to the transplant outcomes registry of the C.W. Bill Young Cell Transplantation Program, also called the Stem Cell Therapeutic Outcomes Database. The transplant outcomes registry is managed under a Federal contract by Center for International Blood and Marrow Transplant Research® (CIBMTR).
 

A bone marrow transplant is a potentially life-saving treatment for people with leukemia, lymphoma and many other diseases. Patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then the patient's own (autologous transplant) or a donor's (allogeneic transplant) healthy blood-forming cells are given directly into the patient's bloodstream, where they can begin to multiply and function.

For a patient's body to accept a donor's healthy cells, the donor's tissue type needs to match the patient's type as closely as possible. Patients who do not have a suitably matched donor in their family may have their doctor search for an unrelated bone marrow donor or donated umbilical cord blood unit through the registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry. The registry is a listing of potential bone marrow donors and donated cord blood units and is operated under federal contracts by the National Marrow Donor Program d/b/a NMDP^SM.

Related Link: Learn About Transplantation

The blood-forming cells can come from three sources: bone marrow, peripheral (circulating) blood, and the blood in the umbilical cord and placenta after a baby's birth.

• Bone marrow produces blood-forming cells for the body. Bone marrow is a spongy tissue found inside larger bones. In a surgical procedure, doctors make several small incisions through the skin over the back of the pelvic bone to draw out the marrow.
• Peripheral (circulating) blood stem cells (PBSC) are blood-forming cells found in the bloodstream. Normally, the bone marrow releases only a small number of blood-forming cells into the bloodstream. To donate PBSC, a donor is given injections of a medication that makes the blood-forming cells move from the bone marrow into the blood. The cells are collected from the blood during an outpatient procedure, similar to plasma or platelet donation.
• Umbilical cord blood is collected from the umbilical cord and placenta after a baby is born. This blood contains a large number of blood-forming cells. (These are not embryonic stem cells.) If the cord blood meets standards for transplant, it is stored at a public cord blood bank for future use.

Related Links: Learn About When Your Doctor Recommends a Transplant; Donating Marrow; Donating Umbilical Cord Blood
 

An umbilical cord blood unit is the blood collected from the umbilical cord and placenta after a baby is born. Cord blood is rich in blood-forming cells. (These cells are not embryonic stem cells.) In a cord blood transplant, these healthy cells replace the diseased cells of patients with leukemia, lymphoma, or many other life-threatening diseases.

Cord blood is one of three sources of cells used in transplant; the other two are bone marrow and peripheral blood (circulating blood), which is also called peripheral blood stem cells or PBSC.

Related Link: Cord Blood Information
 

Like bone marrow, umbilical cord blood is rich in blood-forming cells*. In a cord blood transplant, these healthy cells replace the diseased cells of patients who have leukemia, lymphoma, or many other life-threatening diseases.

*The cells in cord blood are not embryonic stem cells.

The patient’s doctor decides which source of blood-forming cells is best for the patient: cord blood, bone marrow, or cells from the peripheral (circulating) blood (known as PBSC). However, not all transplant centers are able to do cord blood transplants.

The chances of a successful bone marrow or cord blood transplant are better when the blood-forming cells are from a donor who closely matches the patient's tissue type. Research suggests that cord blood may not need to match as closely as is required for a marrow donor. Umbilical cord blood may be especially promising for:

• Patients who have difficulty finding a matched marrow donor
• Patients from diverse heritages who often have an uncommon tissue type
• Patients who have a life-threatening genetic disorder
• Patients who need a transplant quickly

Related Link: The Need for More Cord Blood Donations
 

Each donor is told to contact the public bank where her baby's cord blood is stored if the baby develops a disease that can be passed on to others.

When a cord blood unit is found to be a potential match for a patient, every effort is made to contact the donor. This is to make sure that the baby's health has not changed since the cord blood donation because some changes could affect the transplant results.

Every effort is made to notify the individuals affected if:

• The donor develops health problems that could potentially affect the recipient of the donated unit.
• The recipient develops health problems that could be due to the donated cord blood.

A Donor and Patient Safety Monitoring Committee that is made up of experts in blood stem cell transplant tracks these types of incidents and follows through until they are resolved. This Committee is maintained by one of the Program Contractors.
 

A transplant can help a patient live a longer and healthier life. For many patients, a transplant offers the best or only chance for a cure and for survival. 

There are also risks from a bone marrow or cord blood transplant. Some patients suffer from life-threatening problems as a result of their transplant. These problems can include serious infections and graft-versus-host disease (GVHD), in which the transplanted cells attack the patient's body. 

The patient, doctor, and patient's family need to consider many things, including:

• Disease
• Disease status
• Patient's age
• Patient's overall health
• Availability of a closely matched donor
• Other treatment options

A timely referral to a transplant center for consultation can increase a patient's likelihood of a favorable outcome if a transplant is needed.

Related Links: Learn About Transplantation, Physician Resources. 
 

More than 130,000 bone marrow and umbilical cord blood transplants have been facilitated through the NMDP^SM since 1987*.

How well the transplant works depends on many factors, such as:

• The disease being treated
• The status of the disease
• The patient's age and general health
• How closely the donor or cord blood match the patient
• When the patient is referred to the transplant center

Related Links: Learn About Transplantation, Physician Resources, Transplant Outcomes and Data.

*NMDP is a contractor for the C.W. Bill Young Cell Transplantation Program and was also the contractor for the National Bone Marrow Donor Registry (established in 1987).

Almost three-fourths of transplants using an unrelated marrow donor or cord blood unit are for patients with leukemia or lymphoma. The specific types of these diseases include:

• Acute lymphoblastic leukemia (ALL)
• Acute myeloid leukemia (AML)
• Chronic lymphocytic leukemia (CLL)
• Chronic myeloid leukemia (CML)
• Juvenile myelomonocytic leukemia
• Lymphomas: Hodgkin and non-Hodgkin

Other diseases that may be treated with a transplant include:

• Hemoglobinopathies such as sickle cell anemia and thalassemia
• Inherited immune system disorders, such as severe combined immunodeficiency (SCID) and Wiskott-Aldrich syndrome
• Inherited metabolic disorders, such as Hurler's syndrome and leukodystrophies
• Marrow failure states such as severe aplastic anemia and Fanconi anemia
• Myelodysplastic syndromes
• Myeloproliferative disorders
• Plasma disorders such as multiple myeloma

Related Links: Learn About Transplantation, Physician Resources.
 

When considering a bone marrow or cord blood transplant as a treatment option, it may be helpful to know how many other people with your disease received a transplant. However, keep in mind that no two people are exactly alike, and responses to the same treatment can vary greatly.

To understand how statistical reports apply to your situation, talk to your doctor.

• To view reports about the number of transplants performed in the United States and other transplant statistics, see Transplant Outcomes.
• To help you prepare questions to ask your doctor, see Learn About Transplantation.

The Health Resources and Services Administration does not diagnose medical conditions, offer medical advice, or endorse specific products or services. Please do not rely on any website for medical diagnosis or treatment. Consult your health care provider about your personal health concerns.
 

A transplant may use cells taken from the patient (autologous) or from a volunteer donor (allogeneic).

• An autologous transplant uses the patient's own blood-forming cells that are collected and used later for transplant.
• An allogeneic transplant uses cells from a volunteer marrow donor or cord blood unit. The human leucocyte antigens (HLA) must closely match the patient's HLA type. The donor or cord blood unit can be either related or unrelated to the patient. Related donors are usually a brother or sister. Researchers are studying transplant using the patient's parent or child as a donor, also called a haploidentical (half-matched) transplant, and transplants from mismatched unrelated donors.

Patients who do not have a closely matched donor in their family may search for an unrelated marrow donor or donated cord blood unit through the registry of the C.W. Bill Young Cell Transplantation Program (also called the NMDP Registry^SM).

Related Links: Learn About Transplantation; Donor Information; Physician Resources.
 

Survival outcomes data show an estimate of the percentage of people with a certain disease who survive for a specific amount of time. When looking at survival outcomes data, keep in mind that outcomes are affected by:

• Patient factors, such as specific diagnosis, disease status, age, overall health, and previous treatments.
• Donor factors, such as who donated the cells (the patient, a family member, or an unrelated donor), the source of the cells (bone marrow, peripheral blood, or umbilical cord blood) and the level of matching between the patient and the donated cells.
• Number of patients included. Data that include larger numbers of patients can more accurately predict likely outcomes for other patients.
• When the patients were treated. Treatments can change over time. Data for patients treated five years ago might not represent what patients can expect today.

Survival outcomes can help you and your doctor better understand your prognosis and can be helpful in making treatment choices.

• Outcomes data can help you and your doctor understand the likely course of your disease (prognosis). The data show how other people with a similar disease responded to different treatments.
• Outcomes data cannot predict the outcome of any one person. The data can only report what may happen based on the experiences of other patients.

No two people are exactly alike and responses to the same treatment can vary greatly. To understand how information applies to you, talk to your doctor.

• To help you prepare questions to ask your doctor, see Learn About Transplantation.

View survival outcomes data.

The Health Resources and Services Administration does not diagnose medical conditions, offer medical advice, or endorse specific products or services. Please do not rely on any website for medical diagnosis or treatment. Consult your health care provider about your personal health concerns.
 

Survival after transplant is improving for all donor types. In general, most transplant centers select human leukocyte antigen (HLA)-identical siblings before other donors. When an identical sibling donor is not available, haploidentical (half-matched related) and matched unrelated donors may be good options. Certain diseases or the urgent nature of transplantation may affect the choice of donor.

Survival outcomes data shows survival for related and unrelated donors by disease.

The CIBMTR Summary Slides show survival for related donors and unrelated donors for specific diseases (slides 74-103).

Patient Information: Transplant Outcomes; HLA Matching: Finding the Best Donor or Cord Blood Unit; The Search Process.  

Physician Information: Transplant Outcomes; CIBMTR Summary Slides; Comparing Unrelated Donor to Sibling Donor Transplant; Key Findings: Research and Resources.

The Health Resources and Services Administration does not diagnose medical conditions, offer medical advice, or endorse specific products or services. Please do not rely on any website for medical diagnosis or treatment. Consult your health care provider about your personal health concerns.
 

Unrelated donors on the registry of the C.W. Bill Young Cell Transplantation Program (also called NMDP Registry^SM) are carefully screened and tested. These tests significantly reduce the risk—but do not completely eliminate the possibility—that a donor could pass a disease to a patient.

Before they are approved to donate, donors:

• Are tested for infectious diseases such as acquired immunodeficiency syndrome (AIDS) and hepatitis
• Answer questions about their health history. This helps doctors find risks that the donors may have, such as infectious or hereditary diseases
• Are checked by doctors for signs of disease

The National Marrow Donor Program d/b/a NMDP, which operates the under federal contracts, keeps current with diseases and infections transmitted by blood. Sometimes new or rare diseases, such as West Nile virus or Zika virus, become public concerns. When this happens, the NMDP uses available methods to watch for these diseases. If a donor shows signs of disease, in some cases he or she will not be allowed to donate. In other cases, where the risk to the patient is considered small, it may be up to the transplant doctor and patient whether or not to use that donor.

Patient and donor safety are top priority for the NMDP. The NMDP Donor and Patient Safety Monitoring Committee helps ensure that the processes and procedures are effective and safe for donors and patients. 
 

Unrelated cord blood units on the registry of the C.W. Bill Young Cell Transplantation Program (also called the NMDP Registry^SM) are carefully screened and tested. These tests significantly reduce the risk—but do not completely eliminate the possibility—that the cord blood unit could pass a disease to a patient.

Before a mother donates her baby's umbilical cord blood, she: 

• Answers questions about her eligibility to donate
• Completes health history forms about herself and her family; this information helps doctors determine if the mother is free from diseases that could be transferred to another person through blood-forming cells

After the cord blood is donated, a sample of the mother's blood is tested for infectious diseases such as acquired immunodeficiency syndrome (AIDS) and hepatitis. Patient and donor safety are the top priority for the NMDP (the NMDP operates the registry under federal contracts). The NMDP Donor and Patient Safety Monitoring Committee helps ensure that the processes and procedures are effective and safe for donors and patients. 
 

Hospitals that perform bone marrow or cord blood transplants are called transplant centers. Transplant centers are located in the United States and worldwide. The Transplant Center Directory is a searchable list of transplant centers in the U.S. Some questions to consider when choosing a transplant center include:

• Does the patient's health plan have rules about which transplant centers the patient can go to?
• Did the patient's doctor recommend a transplant center?
• Does the transplant center perform unrelated marrow donor or cord blood transplants? Some centers only perform autologous or related donor transplants.
• Has the transplant center performed transplants for many patients who have the same disease as the patient?
• Has the transplant center cared for many patients in the patient's age group? Some centers work mostly with adults or mostly with children.

Related Link: Planning for a Transplant
 

An unrelated bone marrow or cord blood transplant in the U.S. is expensive and can range from $240,000 to over $450,000 for both the transplant and up to 6 months of care after the transplant. Most health plans cover at least part of the cost, but they don't always cover the cost to search for a closely matched donor or cord blood unit, which might cost from $10,000 to over $50,000. When the donor is related to the patient, there is no cost to search for a donor on the NMDP Registry^SM; but, there is a cost to test to see if the relative is a match. Some patients use their own cells, instead of another person’s cells, for their transplant. This is called an autologous transplant and costs are generally lower for this type of transplant.

In the United States, you can also check with state and federal programs, such as Medicaid and Medicare, to see what government health benefits for which you are eligible. Whether or not the benefits cover the costs of a transplant often depends on the state or territory where the patient lives and the disease being treated. People with private insurance should call the insurance company or place of work for help understanding the patient's health plan.

Many transplant centers have staff who can help answer financial questions. Ask the transplant coordinator to contact someone who can help you with insurance and money matters.

For more information about costs, you can:

• Read Planning for a Transplant
• Contact a BMT Patient Navigator at NMDP Patient Support Center (NMDP is a contractor for the C.W. Bill Young Cell Transplantation Program)

A closely matched bone marrow donor or cord blood unit is one important factor for a successful transplant. To search for a donor or cord blood unit, the doctor has the patient's blood tested to determine their human leukocyte antigen (HLA) type.

HLA are proteins—or markers—found on most cells in a body. The immune system uses these markers to recognize which cells belong in your body and which do not. Because HLA markers are inherited, a family member may be the patient's closest match. However, 70% of patients do not have a fully matched donor in their family.

If the patient does not have a closely matched donor in his or her family, they will need an unrelated donor or cord blood unit. The transplant center conducts a search of the registry of the C.W. Bill Young Cell Transplantation Program (also called the NMDP Registry^SM) to create a list of potential marrow donors or donated cord blood units that match the patient.

Related Links: Searching for a Marrow Donor or Cord Blood Unit, Physician Resources.
 

A preliminary search of the registry of the C.W. Bill Young Cell Transplantation Program (also called the NMDP Registry^SM) provides a snapshot of the unrelated marrow donors and umbilical cord blood units on the registry that may match the patient at a given time.

Results of a preliminary search can:

• Indicate how challenging the search for a donor or cord blood unit may be
• Help shape the patient's treatment plan

A preliminary search can be requested by any licensed physician as soon as the patient's tissue typing is completed and can be repeated at any time, at no cost.

If the search process continues, the patient will be referred to a transplant center. The transplant center will activate a formal search, confirm availability of potential donors, and select a closely matched marrow donor or cord blood unit.

Related Links: Donor Information, Physician Resources.
 

Contact your transplant center coordinator or doctor. They will keep you up to date on how your search is going.

For questions about the general search process for an unrelated marrow donor or cord blood unit, you can contact a BMT Patient Navigator at the NMDP Patient Support Center (NMDP is a contractor for the C.W. Bill Young Cell Transplantation Program).
 

It can take a few weeks to a few months to identify a closely matched marrow donor or cord blood unit on the registry of the C.W. Bill Young Cell Transplantation Program, also called the NMDP Registry.

Related Links: Donor Information, Physician Resources.
 

After an initial transplant consultation, most patients return to the care of the doctor who referred them. The referring doctor continues to provide patient care during the search process until the patient is ready for transplant. During this time, communication between the referring doctor and the transplant doctor is critical to coordinate treatment.

• Doctors discuss any treatment changes to avoid therapies likely to increase a patient's transplant complications.
• The transplant doctor updates the referring physician on the search progress.

The transplant team cares for the patient during transplant and recovery. The team also works with the referring doctor to coordinate the patient's long-term post-transplant care.

Related Link: Physician Resources
 

The NMDP Registry^SM Patient Support Center provides support, information and resources for transplant patients, caregivers and families.

The NMDP Patient Support Center team can help you:

• Learn about transplant
• Understand the donor search process
• Find a transplant center
• Get answers to your financial or insurance questions
• Connect with other transplant patients and caregivers through our Peer Connect program
• Find and join clinical trials
• Prepare for and cope with life after transplant

All services and resources are free. Staff are available Monday through Friday, 8 a.m. to 5 p.m., Central time.

• Call: 1-888-999-6743 
• Email: patientinfo@nmdp.org.

Interpreters are available. If you need information in another language, tell us—in English—what language you speak. Please stay on the line until an interpreter joins the call. (This will take 4 to 8 minutes.)

To find more information about the services and resources NMDP provides to patients see Support and Resources.

To find more information about the services and resources NMDP provides people who are taking care of a transplant patient see Caregivers & Transplant.