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What is the
National Marrow Donor Program® (NMDP)?
The NMDP facilitates unrelated marrow and blood stem cell transplants for
patients with life-threatening blood diseases by recruiting donors,
maintaining a Registry of more than 5 million volunteer potential donors and
offering patient services. Today, more than 170 patients receive blood
stem cell transplants through the NMDP each month. Many more patients
need transplants and the NMDP is working to close this gap.
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What is the
Registry?
At any time, there are about 3,000
people searching for a donor for a stem cell transplant.
About only 30% of those in need of a transplant will find a suitable
donor within their family. The
other 70% must rely on the capacity of others to give of themselves.
The NMDP maintains a Registry of the tissue typing information of more than 5,000,000
people that have signed up to be donors. When
a patient is in need of a transplant and there are no related matches, a search
of the Registry is performed to find any possible unrelated matches.
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What are stem
cells?
The stem cells that are used in
stem cell transplants are blood stem cells.
These cells have the ability to become the different types of blood cells
(e.g., red blood cells, white blood cells, platelets).
These stem cells are typically found in three places:
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Bone marrow, the spongy substance in the bone
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The blood stream, in smaller amounts
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Cord blood, the blood in the umbilical cord and placenta when a
child is born
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Who needs a
donor (allogeneic) transplant?
Approximately 75% of those needing
a stem cell transplant have some form of leukemia. There are a variety of other diseases for which stem cell
transplantation can be a treatment option.
Some of these include: Hodgkin’s Disease, Non-Hodgkin’s Lymphoma,
Aplastic Anemia, Myelofibrosis, Hunter’s Syndrome, Krabbe Disease,
Hemophagocytosis, Sickle Cell Disease, Severe Combined Immunodeficiency,
Multiple Myeloma, as well as many others.
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What happens
if a patient can't get a transplant?
In most cases, patients who don't get the transplant they need will
die. Certain treatments may prolong a patient's life, but in most
cases these treatments will not cure the disease.
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What is
involved in joining the Registry?
To join the Registry, you need to
first locate a donor center (see Joining the
Registry) near you and schedule an appointment or attend a bone marrow
drive. At the center or drive, you will be given a health questionnaire and
education about being a donor and if you are a suitable candidate and willing,
they will draw a small vial of blood to be tested.
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Does it cost
anything to join the Registry?
The lab work required to test the
blood samples can cost quite a bit. Donor
centers keep this cost lower for volunteers wishing to join the Registry.
This cost is often around $65, but may be lower depending of the funding
available at that specific donation center.
In Cincinnati, for example, joining the registry may be free if the
volunteer also donates blood, depending on funding.
Many centers charge only $25.
If you pay for the testing
yourself, this money is tax-deductible.
If you are identified as a
potential donor for someone, you are not charged for further blood tests or the
donation procedure. The patient or
the patient’s insurance covers these costs.
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What should I
bring when I join the Registry?
You should bring a social security
number or drivers license and the addresses and phone numbers of two alternative
contacts who do not live with you or with each other.
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What is the
commitment of joining the Registry?
When joining the Registry, you are
committing to donating stem cells, either through bone marrow or peripheral
blood, for any potential matches, whether that is immediately or several years
away, until your 61st birthday.
You should respond as quickly as possible if you are contacted as a
match.
You can remove yourself from the Registry at any time and you would never be
forced into donation if you remained on the list, but it is unkind to be a match
for someone in need and get his or her hopes up only to refuse to donate.
This is a key point that the NMDP stresses for those interested in joining the
Registry. If you don’t think that
you can commit to being a donor for anyone, it is better not to join.
If you wish to be tested for one specific person, see the information in
Private
Donation.
It is also important to make sure that you keep the NMDP informed of address
changes as well as changes in your health status.
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Are
there any limitations to who can join the Registry?
You must be between the ages of 18
and 60 and in general good health. The
following are some guidelines on the eligibility of certain afflictions.
If you have questions about other health problems, call your donor
center.
AIDS: If you
have or are at risk for HIV (AIDS), you cannot become a marrow donor.
ASTHMA: Serious
asthma (poorly controlled, requiring hospitalization, etc) is not acceptable.
BACK PROBLEMS:
Back problems (sprains, strains and aches) are common and may not interfere with
a marrow donation. Serious back problems, particularly those requiring surgery,
may be a cause for deferral. If you have significant back problems, consult your
donor center.
BLOOD PRESSURE: Elevated
blood pressure (hypertension) is acceptable if controlled by medication.
CANCER: Cured
local skin cancer (only simple basal cell or squamous cell) is acceptable.
Cervical cancer in situ is acceptable. All other forms of cancer are
unacceptable.
DIABETES: Medication-dependent
diabetes is not acceptable. Diabetes controlled by diet is acceptable.
EPILEPSY:
More than one seizure in the past year or multiple seizures are not acceptable.
Epilepsy controlled with medication, when there has been no more than one
seizure in the past year, is acceptable.
HEART DISEASE: Prior
heart attack, bypass surgery or other heart disease is not acceptable. Mitral
valve prolapse that does not require medication or restrictions is acceptable.
Irregular heartbeat not requiring medication is acceptable.
HEPATITIS: Hepatitis
B surface antigen is not acceptable. Hepatitis C antibody is not acceptable. Any
other hepatitis history must be evaluated early in the actual search process.
Hepatitis vaccine is acceptable.
IMMUNIZATIONS: Immunizations
are acceptable, excluding investigational vaccines. Some immunizations require a
waiting period before joining the Registry.
LYME DISEASE: Asymptomatic Lyme disease is acceptable if
the donor has been treated successfully with antibiotics. Chronic Lyme disease
is unacceptable.
MALARIA: Malaria
more than three years ago is acceptable. If the volunteer finished a full course
of antimalarial drugs more than six months ago, he or she is acceptable.
OBESITY: Body
Mass Index is used to evaluate weight. Donors may be deferred if obesity
presents donation risk.
ORGAN OR TISSUE TRANSPLANT: Heart,
lung, kidney, bone or other organ or tissue transplant recipients are deferred.
PREGNANCY: Marrow
cannot be collected at any time during pregnancy. Women who are pregnant are
temporarily deferred.
SEXUALLY TRANSMITTED DISEASES:
Any history of sexually transmitted diseases must be evaluated early in the
actual search process.
TATTOOS/ PEIRCINGS: Tattoos or ear, skin or body piercings may be deferred.
Transplant center approval is required before proceeding.
TUBERCULOSIS: Active
pulmonary tuberculosis within the last two years is not acceptable.
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How is a
match determined?
When looking for a potential
match, six different HLA molecules are examined.
HLA stands for Human Leukocyte Antigen.
These are protein molecules found on white blood cells.
The more molecules that two people share, the better the match.
Siblings offer the best chance of finding an HLA match, but there is only
a 25% chance that this will happen. In
fact, only 30% of those in need find a match through a family member. Being an HLA match is independent of blood type, so it is not
necessary to have the same blood type as the recipient.
These types of molecules are
inherited, so matches are most likely found within someone’s ethnic group.
People in need of a transplant with unusual or minority ethnic
backgrounds often have a more difficult time in finding a donor than Caucasians.
For this reason, there is often a push to diversify the Registry as much
as possible. Special recruitment
groups exist for the following communitites: Black and African American;
American Indian and Alaska Native; Asian, Native Hawaiian and Other Pacific
Islander; or Hispanic and Latino.
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Can I be
tested to see if I'm a match for just one specific person?
You can be tested for a specific
person, but this must be done through a private organization. See Private
Donation for more information. Once tested privately, you have the
option of adding your results to the NMDP Registry.
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How long will
it take for my HLA information to be added to the Registry?
When being tested through most
donor centers, it takes 6-8 weeks for the typing results to be added to the
Registry.
Private testing is often quicker,
sometimes as little as 8-21 days.
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What happens
if I am a match for someone?
If you are a potential match,
further testing will be required to determine if you are indeed a match.
This will be done at the expense of the patient or the patient’s
insurance.
If you are a match, you will be
given more education about the donation process. You will then decide whether or not you are prepared to be a
donor.
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What is
involved in the donation process?
There are two processes through
which stem cells may be extracted from a donor: through a bone marrow harvest or
through peripheral blood apheresis. The
procedure used will depend on the patient, the patient’s illness and the
patient’s doctor. The following
explains what is involved with each procedure.
Bone Marrow Harvest
This method is used to extract the
stem cells directly from the bone marrow, the spongy substance found inside the
bones. The donor will undergo
general anesthesia while the doctor extracts the bone marrow from the back of
the pelvic bone. The procedure
takes approximately one to two hours and is generally performed as an outpatient
procedure.
Most donors have bone pains and
aches that last between a couple of days and a couple of weeks.
The pain has been compared to falling on your tailbone on ice.
Your marrow naturally replenishes itself within four to six weeks.
Peripheral Blood Apheresis
This method is used to extract the
stem cells from the blood stream. The
donor must take subcutaneous shots of filgrastim for four to five
consecutive days to mobilize the stem cells from the bone marrow into the blood
stream.
During the apheresis procedure,
blood is drawn out through a vein in one arm and passed though an apheresis
machine that filters out the stem cells. The
remaining blood is returned through a needle in your other arm.
This procedure generally lasts three to four hours and may need to be
repeated if not enough stem cells were collected the first time.
The
filgrastim can cause some bone
and muscle pain, headache and fatigue. The
effects diminish one to two days after the last dose is given.
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What is the
time involvement of donation?
On average it can take 40 to 46 hours over four to eight weeks, which
includes the time required for an information session and medical exam.
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Will I have
to travel to where the patient is to donate?
Usually, the donor doesn't have to go too far from home for either
procedure. There are 100 medical centers nationwide where donors go to
have marrow collected and many apheresis centers.
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What are the
risks of donation?
Marrow Donation
As with any surgical procedure, there are some risks with marrow
collection. Serious complications are rare but could include
anesthesia reactions, infection, transfusion reactions or injuries at the
needle insertion sites.
Peripheral Blood Apheresis
Although long-term safety data on filgrastim administration to healthy individuals
is limited, several studies have evaluated peripheral blood stem cell
collected donors one to five years after donation and have seen no adverse
effects.
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What are the
side effects of donation?
Marrow Donation
Following the procedure, donors can expect to feel some soreness in the lower
back for a few days or longer. Donors also have reported feeling
fatigued and having some difficulty walking. The time it takes to
recuperate varies form person to person. Most donors are back to
their usual routine in a few days. Some may take two to three weeks
before they feel completely recovered.
Peripheral Blood Apheresis
Symptoms can include bone pain, muscle pain, nausea, insomnia and fatigue
after receiving filgrastim. Platelet counts could also be temporarily
lowered for several weeks.
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I think that
I am already part of the Registry, is there a way I can verify this?
Go to the following link: https://www.marrow-donor.org/CONTACT/verification_registry_status.html
Or call 1-800-MARROW-2
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What is
involved in the transplant process for the patient?
The patient is given high doses of chemotherapy and/or radiation.
These treatments ideally destroy all of the cancer cells, but they also kill
other fast reproducing cells such as hair cells, the lining in the mouth and
digestive tract, and blood stem cells (the cells that turn into red blood
cells, white blood cells and platelets). Without the blood stem cells,
the patient's body is unable to create enough blood cells to sustain
life. Once the patient is given the marrow-destroying treatments,
there is no turning back.
The patient is then given the donor's stem cells by an infusion, similar to
a blood transfusion. It takes about three weeks to see the first
evidence of engraftment, which means that the new stem cells have taken hold
in the patient's system and are beginning to produce new blood cells.
The patient will have a compromised immune system for quite a while and must
take care as to who and what he comes in contact with. He may be
hospitalized for several weeks after the transplant. The patient will
receive many blood and platelet transfusions as well as injections of
filgrastim until he is able to make sufficient blood cells on his own.
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What is the
success rate of allogeneic transplants?
The success rate of allogeneic transplants varies according to the disease
being treated, the stage of the disease, and the age and condition of the
patient. Survival rates (measured at two to three years) are in the
range of 40 to 60 percent.
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If I am a
donor for someone, when can I meet them?
The donor may be told the patient's age, gender and diagnosis, but not a
name, geographic location or any other identifying information.
Individual transplant centers have different policies regarding
communication between patients and their donors. Some transplant
centers provide updates on the patient's conditions. Others do
not. Some may allow immediate, anonymous communication and /or direct
contact after one year if both parties are willing. Others do not.
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How do I update my
information if I am already on the Registry?
You should contact the NMDP if you have moved, have a health status change
that may make you ineligible to be a donor or if you wish to remove yourself
from the Registry. Call 1-800-654-1247 or visit the following link: https://www.marrow-donor.org/CONTACT/update_your_address.html
