FAQ


Registration FAQ

Why is there a need for more donors? >

On any given day, more than 6,000 men, women and children desperately search the National Marrow Donor Program (NMDP) Registry for a matching bone marrow donor or cord blood unit. These patients have leukemia, MDS, lymphoma and other life-threatening diseases that can be treated by a bone marrow or cord blood transplant. Even with a Registry of millions, there are many patients waiting and hoping, unable to find a match. Donors with diverse racial or ethnic backgrounds are especially needed. Bone marrow is matched based on ethnicity.

What is a bone marrow transplant? >

Bone marrow transplant is a life-saving treatment for people with leukemia, lymphoma and many other diseases. First, patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then a donor's healthy blood-forming cells are given directly into the patient's bloodstream, where they can begin to function and multiply. In order for a patient's body to accept these 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 search the NMDP Registry for an unrelated bone marrow donor or cord blood unit.

Why is there a cost associated with registering? >

When you join the NMDP Registry, you may or may not be asked to pay the costs of your tissue typing. Costs depend on resources and support available. Your tissue type is used to match you to patients and is identified by testing a sample of your blood or cheek cells. On average, the tissue typing to add each new donor to our registry costs $100. Sometimes, a sponsor may cover all or part of these tissue-typing costs. Other times, there is no sponsor to cover the costs, and donors are asked to pay the tissue-typing cost when they join. We count on people like you to help offset these costs. Any contribution you make to pay for tissue-typing costs is appreciated and tax deductible.

What is my commitment if I join? >

When you join the NMDP Registry, you make a commitment to: * Be listed on the Registry until your 61st birthday, unless you ask to be removed. * Consider donating to any searching patient who matches your tissue type. * Keep us updated if your address changes, you have significant health changes or you ever change your mind about being a donor. * Respond quickly if you are contacted as a potential match for a patient. You have the right to change your mind about being a donor at any time. Donating is always voluntary. If you decide you do not want to donate, let us know right away. That way we can continue the search for another donor without dangerous — even life-threatening — delays for the patient.

Can I get tested for a specific patient? >

When you join the NMDP Registry, you make a commitment to consider donating to any searching patient who matches your tissue type. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, because a late decision not to donate can be life-threatening to a patient, please think seriously about your commitment before deciding to join our Registry. You can request a copy of your own tissue typing results after you join the NMDP Registry. However, if you want to be tested only for a specific patient, you will need to have your tissue typing test done privately. You can contact the patient's transplant center or transplant doctor for more information.

How can I verify that I am on the Registry? >

Whether you join the NMDP Registry online or in person, you are part of the same Registry. If you have previously given a blood sample or cheek cell sample to be tested for our Registry, you do not need to join again. If you are unsure whether you joined, you can complete our online form to confirm you are on the Registry or you can contact us at 1 (800) MARROW-2.

How likely is it that I will donate to someone? >

We cannot predict the likelihood because there is so much diversity in tissue types. You may never be identified as a match for someone needing a transplant. Or, if yours is a common tissue type, you may be identified along with a number of other potential donors who match a patient. The patient's doctor decides which donors will be contacted. If we call to say you are a match for a patient, you may be the one who can save the patient's life.


Donation FAQ

Is the bone marrow donation procedure painful? >

General or regional anesthesia is always used for this procedure. Donors feel no needle injections and no pain during marrow donation.

Do all bone marrow donations involve surgery? >

The majority of donations do not involve surgery. The patient's doctor most commonly requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and outpatient. If marrow is requested, it is a surgical procedure, usually outpatient.

Do donors have to pay for the donation procedure? >

Donors never pay for donating. All medical costs are paid by the patient's medical insurance or by the patient, sometimes with NMDP assistance. The NMDP reimburses donors for travel costs, and may reimburse other costs on a case-by-case basis.

Are Pieces of bone removed from the donor? >

Pieces of bone are not removed from the donor in either type of donation. A PBSC donation involves taking the drug filgrastim for five days leading up to donation in order to increase the donor's needed blood-forming cells. On the fifth day, blood is taken from the donor through one arm, passed through a machine that separates out the blood-forming cells, and returned through the donor's other arm. In marrow donation, no pieces of bone are taken; only the liquid marrow found inside the bones is needed to save the patient's life.

Is donating bone marrow dangerous? >

Though no medical procedure is without risk, there are rarely any long-term effects from donating. Only five percent or less of a donor's marrow is needed to save a life. After donation, the body replaces the donated marrow within four to six weeks. The National Marrow Donor Program screens all donors carefully before they donate to ensure they are healthy and the procedure is safe for them. The NMDP also educates donors, answers questions every step of the way and follows up with donors after donation.

How long is the recovery after donating? >

Due to taking the drug filgrastim, PBSC donors may have symptoms such as headache, bone or muscle pain, nausea, insomnia or fatigue in the five days leading up to donation. These symptoms nearly always disappear one or two days after donating, and the donor is back to normal. Marrow donors can expect to feel fatigue, some soreness or pressure in their lower back and perhaps some discomfort walking. Marrow donors can expect to be back to work, school and other activities within one to seven days. The average time for all symptoms to disappear is 21 days.


MDS FAQ

What is Myelodysplastic Syndrome (MDS)? >

Myelodysplastic syndromes (MDS) were first described in the early 1930s. They were not treated as a separate group of disorders until 1976. Myelodysplastic syndromes (MDS) occurs when the bone marrow and stem cells malfunction.This results in the production of too many defective blood cells and not enough normal blood cells.

What are the Symptoms of Myelodysplastic Syndrome? >

Nearly half of people with MDS have no symptoms at time of diagnosis. When symptoms do occur they can include anemia, weakness, fatigue, headache, bruising, increased bleeding, rash, fevers, mouth sores and lingering illness.

Who can get MDS and how is it diagnosed? >

MDS occurs at an increasing frequency in older people, but it can occur in children too. The average age of diagnosis is 70 years old. MDS is diagnosed in more than 10,000 people in the U.S. each year. In less than a third of patients, MDS progresses over time to become acute leukemia. Diagnosis will be confirmed by first getting a Complete Blood Count (CBC:A group of tests performed on a small amount of blood that provides information about the quantity and quality of each type of blood cell) followed by a bone marrow biopsy (A medical procedure in which a small piece of bone with intact bone marrow is removed for study; usually taken from the posterior Ileac aka the pelvis or hip bone region).

What is bone marrow? >

Bone marrow is soft tissue occupying the inner cavities of bones. It is responsible for blood cell production.

What are stem cells? >

Stem cells are cells that are produced in the bone marrow and differentiate into red cells, white cells, and platelets.