Join the Marrow Donor Program
Frequently Asked Questions
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Can I get tested for a specific patient (i.e., family member or friend)?
The National Marrow Donor Program (NMDP) is a registry of unrelated potential donors willing to help any patient they might match. If you are interested in having your results passed on to a specific person in addition to joining the NMDP, we can get you a copy of your results.
If you are interested in being tested only for a specific friend or family member, a private testing company (for a fee) will test your blood and pass the results onto a specific patient. Dana-Farber's donor center can help you locate a private testing center.
I've already been tested for a family member and would like my results added to the NMDP Registry. How can I do this?
If you have been tested for a specific relative and would also like to be available to give hope to others in need of a transplant, you may join the NMDP.
You must meet the eligibility guidelines for an unrelated donor, provide us with a copy of your test results (if you were tested at Dana-Farber, we can obtain these results for you), and sign a consent form to join the NMDP.
How can I verify that I am on the NMDP Registry?
Please contact us or visit https://www.marrow.org/CONTACT/verification_registry_status.html to confirm your NMDP registration.
Why does a person have to be 18 to be a donor?*
NMDP standards require that volunteer marrow donors be between the ages of 18 and 60. This is standard medical practice. An individual must be 18 to donate marrow stem cells because it is a voluntary procedure that may involve surgery. The person undergoing the procedure must be able to give his or her informed consent. A guardian or parent is not able to sign a release or give consent because unrelated marrow donation is a voluntary procedure and is not beneficial or lifesaving to the donor. Because the patient's physician may request either a marrow donation procedure (which is considered surgery) or a blood-cell donation, a volunteer must be medically eligible for both procedures.
*Related donors have different eligibility requirements than unrelated donors.
If I'm over 60, why can't I be a donor?*
The NMDP recognizes that chronological age does not necessarily correlate to physiological age. However, the NMDP must rely on chronological age when determining eligibility. In addition, with age comes a small increase in the risk of side effects from anesthesia. And, recent NMDP studies reveal that patients receiving marrow or blood cell transplants from older donors have a somewhat poorer survival rate. These age guidelines are meant to protect the safety of the donor and provide the best possible cure for the patient. They are not meant to discriminate.
*Related donors have different eligibility requirements than unrelated donors.
How is a donor found for a patient?
The first place physicians look for a match is within the patient's immediate family. Regardless of race or ethnicity, each person has a unique tissue type (called Human Leukocyte Antigen, or HLA) that is inherited from his or her parents, which is why the chances of finding a match are best among family members. The chances of two siblings matching each other are one in four. If no related donor can be found, the search for an unrelated donor begins.
To help match patients and unrelated donors, the NMDP and other donor registries worldwide maintain a computerized registry that records the tissue type of potential volunteer donors. The computer crosschecks its records to see if there is a match for the patient. The NMDP currently contains approximately 6 million potential donors and 50,000 cord blood units. Worldwide there are over 10 million possible donors and 190,000 cord blood units registered. Patients and families looking for more information on marrow/stem cell transplantation should contact the Stem Cell Transplantation program at Dana-Farber.
What is HLA typing?
Human Leukocyte Antigen (HLA) Typing is done by taking a sample of blood or cheek cells and analyzing it in a laboratory. The typing process has two steps. The first is called serological typing, which is a broad definition of your bone marrow type. The second, more specific typing is done using a DNA method. Your bone marrow "type" is designated by a series of 10 alpha-numeric combinations. There are millions of possible combinations.
Your HLA type is inherited from your parents: one half from your mother and one half from your father. Just as you and your siblings may have inherited similar features, such as hair or eye color, you may also have inherited the same HLA type. The likelihood of finding an HLA match with a family member is approximately 25-30%.
HLA markers are found on the white blood cells (leukocytes) of a patient. A donor's markers are compared to the patient's markers to determine the potential for a match.
How are patients matched with donors?
Proteins called antigens are found on the surface of the white blood cells and other body tissue. Particular antigens, named HLA-A, HLA-B, HLA-C and HLA-DRB1 are essential to the success of marrow and cord blood transplants (also called BMT). These antigens are used to "match" a patient with a donor. When looking for a match it's important to remember that people of the same race and ethnic groups are more likely to match each other.
What are the chances of finding a match?
Finding a suitably matched donor or cord blood depends on how common a patient's HLA type is. For example, as many as 80% of patients in certain ethnic groups will find matching donors. Even in the most common ethnic groups, however some patients have rare types that are difficult to match; conversely, in some rare ethnic groups, some patients easily find donors. Bone Marrow Donors Worldwide estimates that there are as many as 5 million different HLA types.
Can someone who is identified as a potential donor match decline to donate?
Sometimes a potential donor who is successfully matched with a patient needing a transplant may decide not to go forward with the procedure. There are many reasons for saying no, including illness, amount of time involved, the risk, or even fear of the donation process. As a volunteer, the donor is under no form of legal obligation. Individual decisions are always respected. However, a late decision not to donate can be life threatening to the patient. A last minute change of mind may be fatal to the patient awaiting the transplant. Donating marrow or PBSC is a serious commitment. But, most decide to go ahead with the procedure once they balance all the facts and consider what their decision will mean to themselves and the recipient.
What is bone marrow donation?
Bone marrow donation is a surgical procedure that takes place in an operating room. During the marrow donation, which requires anesthesia, you will be lying on your stomach. Generally, the doctors make several (typically one to six) small incisions through the skin over the posterior pelvic bones. The incisions are less than one-fourth inch long and do not require stitches. The doctors will insert a special hollow needle through these incisions over the rear of the pelvic bone. A syringe is attached to the needle to draw out the marrow.
What is PBSC (peripheral (circulating) blood stem cell) donation?
Before donation, a donor takes injections of a drug called filgrastim to move more blood-forming cells from the marrow into the bloodstream. Stem cells are collected from the peripheral (circulating) blood in an outpatient setting using a procedure called apheresis. During apheresis, blood is removed through a needle in one arm, the stem cells are collected from the blood, and the remaining blood components are returned through the needle.
What is the difference between marrow and PBSC donation?
Unlike marrow donation, PBSC donation is a non-surgical procedure, and does not require anesthesia. Marrow donors may experience pain and residual stiffness up to a few weeks after the procedure. PBSC donors experience symptoms such as bone pain and muscle pain prior to the donation while receiving filgrastim (also referred to as G-CSF), the drug used to increase the release of blood-forming cells from the bone marrow, but these symptoms go away within 24 hours of donation.
How will I know whether I'll be asked to donate marrow or PBSC?
If it has been determined you are a complete match for the patient, you will be told which method the patient's physician requests prior to your preparation to donate. You will receive further education about marrow and PBSC donation. You will then be asked to sign an "Intent to Donate" or "Consent" form. At this point, the donor needs to be absolutely certain about making the donation because the patient will begin to undergo treatment to prepare for the transplant.
If you are a match for a patient, the choice of which procedure is ultimately up to you and your medical team. You may be asked to donate one stem cell source or the other depending on the transplant center, or the physician's preference for the patient.
Which method of donation is easier for the donor?
It is not so much a matter of one or the other being easier. One individual may feel marrow donation is the easier procedure, while another may feel that PBSC donation would be easier. Each method has its own discomforts and side effects.
What can I expect as part of the PBSC donation process?
Before: You will be seen by a nurse practitioner or physician assistant at least two weeks before your donation to have a physical exam and blood work, and to make arrangements to receive filgrastim (also known as G-CSF, a protein that causes your bone marrow to increase the production of blood stem cells). You will receive filgrastim injections for five days before your stem cell collection. You may come to DFCI for a daily injection, self-administer, or make arrangements for a visiting nurse to perform the injections, depending on your circumstances.
During: Your stem cells will be collected in an outpatient setting using a procedure called apheresis. During apheresis, blood is removed through a needle from one arm or through your Hickman catheter, the stem cells are collected, and the remaining blood components that are not needed fro transplant are returned through a needle in the other arm.
For apheresis collection, you will come to the Kraft Family Blood Donor Center. The collection process will take up to five to seven hours daily, usually for one or two days.
After: You may leave the Kraft Family Donor Center the same day you donate. You will feel tired at the end of the collection process, so we recommend that someone drive you home afterwards.
What are the side effects of filgrastim?
Filgrastim (also called G-CSF or Neupogen) may cause headaches, rash, fever/chills, nausea/vomiting, diarrhea, abdominal pain, fatigue, muscle, joint, or bone pain, kidney or liver dysfunction, or a reaction at the site of injection.
What medications can I take while receiving filgrastim?
There are some medications that cannot be taken while you receive filgrastim. Please let your physician and/or nurse know if you are taking any medications (prescription or over-the-counter).
As a donor, what kind of emotional impact may this experience have on me?
We realize that being a donor is an important event in your life. It is to be expected that you may experience a wide range of emotions including stress, anxiety, gratification, and even ambivalence about being a donor. At any time you can talk to a donor advocate (e.g., a clinical social worker) on the donor services care team about your feelings and concerns.
Can I drive after I donate?
We recommend that you have someone with you to drive you home afterwards.
Will I be able to work during the donation process?
Donation affects each person differently. If you can, it is best to take some time off from work during the time period when you will be donating.
What should I avoid during the donation process?
You should not drink caffeinated beverages (coffee, tea, soft drinks) or alcohol. You should not take aspirin or NSAIDs (non-steroidal anti-inflammatory drugs), which include ibuprofen, naproxen, Motrin, Advil, or Aleve. You should avoid taking Pepto-Bismol or other anti-acid liquid medications. Please let your physician and/or nurse know if you are taking any medications (prescription or over-the-counter).
How long will it take for me to recover from donation?
Although everyone's body responds differently to the donation process, you can expect to feel tired for a few days after the time you donate and complete the filgrastim injections.
What medications can I take if I experience discomfort or pain?
You can take acetaminophen (one brand name is Tylenol) or any pain medication that is prescribed by your doctor.
What are the costs for becoming a donor?
If you are an immediate family member of a patient, there is no cost for donor typing, which is the test performed to determine whether you are a match for the patient.
Extended family members and friends of patients who were not tested for the patient can register with the National Marrow Donor Program to be a donor for any patient who may need a bone marrow or stem cell transplant. The only cost associated with joining the NMDP is the cost of the Human Leukocyte Antigen (HLA) testing, which varies by testing location. Many insurance plans in Massachusetts, New Hampshire, and Rhode Island provide coverage for this test. If your insurance does not provide this coverage, there may be funding available to cover your testing cost.
This fee may be covered by some health care insurance plans, or may be waived by donating platelets three times at the Kraft Family Blood Donor Center at Dana-Farber.
You can also help by making a tax-deductible donation to help cover the cost of testing for other people who would like to join the NMDP.
What are the costs for donating?
There is no cost to the donor for donation. The patient's insurance company will be responsible for all medical charges related to the donation process.
Will I be compensated for donating?
No.
Who should I call if I have questions after I donate?
If you need to contact someone once you return home after donation, please contact your donor coordinator.
How do I become a donor?
Your generosity as a bone marrow or stem cell donor could help a patient win his or her battle with cancer. Stem cell and bone marrow transplantation provide a potential cure for patients with primary bone marrow failure or with malignancies of the bone marrow and lymph nodes, such as leukemia and lymphomas.
If you are in good health, between the ages of 18 and 60, and would like to become a potential donor, please contact:
The National Marrow Donor Program at DF/BWCC
Phone: (617) 632-2561 or (866) 875-DFCI (3324)
E-mail: NMDPDonor@dfci.harvard.edu
Web: www.dana-farber.org/nmdp
My family member is a patient who may need a bone marrow or stem cell transplant. He/she told me I need to have my blood drawn, why?
The first step in searching for a donor for your family patient is for you and other family members of the patient to get HLA typed. This is done by taking a sample of blood and analyzing it in our laboratory. The typing process has two steps. The first is called serological typing, which is a broad definition of your bone marrow type. The second, more specific typing is done using a DNA method. Your bone marrow "type" is designated by a series of 10 alpha-numeric combinations. There are millions of possible combinations.
Your HLA type is inherited from your parents: one half from your mother and one half from your father. Just as you and your siblings may have inherited similar features, such as hair or eye color, you may also have inherited the same HLA type. The likelihood of finding an HLA match with a family member is approximately 25-30 percent.
If I register with the NMDP as a potential donor, what does this mean for the future?
Becoming a volunteer donor is a serious commitment. If you join the NMDP registry you are asked to stay committed to donating to any anonymous patient, anywhere in the world, regardless of the patient's sex, age, race or ethnicity. You will remain on the registry until your sixty-first birthday.
Sometimes a potential donor who is successfully matched with a patient may decide not to go forward with the procedure. There are many reasons for saying no, including illness, amount of time involved, changes in your life, or even fear of the donation process. As a volunteer, the donor is under no form of legal obligation.
However, because a late decision not to donate can be life threatening to the patient, we ask that you seriously consider the commitment you are about to make before you join the donor registry. Changing your mind at the last minute may be fatal to the patient awaiting the transplant.
If I am tested for a family member, am I automatically part of the NMDP registry for other patients who may need bone marrow or stem cell transplants?
No. If you'd like to become part of the NMDP registry, you will need to let your clinician know. You will need to complete a consent form and obtain a copy of your HLA typing.
If I am identified as a donor match through the NMDP, can I meet the patient I donate for?
In many cases, after the patient's transplant, you can have anonymous contact facilitated through the donor center, however each situation is unique, and in some cases, for example due to international regulations, contact is not possible.
Does it hurt to donate marrow? Are there side effects?
Marrow donation is done under general or spinal anesthesia so the donor experiences no pain during the collection procedure. Pain medication is commonly prescribed after marrow donation.
Discomfort and side effects vary from person to person. Common side effects of marrow donation include:
- Lower back pain
- Fatigue
- Stiffness when walking
- Bleeding 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.
Does donating PBSC hurt? Are there side effects?
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 the filgrastim injections and disappear shortly after donation. Other common side effects are nausea, trouble sleeping and tiredness. Less than one percent of donors have an allergic reaction to filgrastim, which may include skin rashes or shortness of breath.
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 by slowing down the procedure or giving the donor calcium. Less common side effects of the donation procedure are a decrease in the blood platelet count, lightheadedness and nausea.