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Why is there a need for people to join the NMDP Registry?

Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell anemia or other life-threatening diseases depend on the registry to find a match to save their life.

Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. To help more patients find a donor, we need to increase the ethnic diversity of the registry. To learn more, see How a Patient's ethnic background affects matching

If I am between the ages of 18 and 35 why am I more likely to be called to donate?

If you are between the ages of 18 and 35, patients especially need you. Doctors choose donors based on what is best for their patient. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor’s age. Research shows that cells from younger donors lead to more successful transplants. Doctors request donors in the 18-35 age group 75% of the time.

Can I still join if I’m over age 40?

We value your commitment to our mission. However, if you're older than 40, we’re unable to add you to the registry due to our age requirements. Studies show that patients receiving blood stem cells from younger donors have a better long-term survival rate. The safety of both the patient and donor is our biggest priority.

You can, however, join the NMDP community as a Champion. You'll have access to members-only content, get news about our life-saving work and be able to connect with other members. Create a Champion account.

You also can get involved by fundraising, hosting a drive, volunteering or spreading the word.

Why does a person have to be 18 to join? Can't my parent sign the consent for me?

You must be 18 to donate because donation is a medical (for PBSC donation) or surgical (for marrow donation) procedure and you need to be legally able to give informed consent. Since donating unrelated bone marrow is a voluntary procedure, a guardian or parent cannot sign a release or give consent for someone under age 18.

Does race or ethnicity affect matching?

Because tissue types used in matching are inherited, you are most likely to match someone of the same ethnic ancestry or ethnic background. Adding more members who increase the ethnic diversity of the registry increases the variety of tissue types available, helping more patients find the match they need. 

To increase the diversity of the registry, we especially need members who identify as

  • Black or African American
  • American Indian or Alaska Native
  • Asian, including South Asian
  • Native Hawaiian or other Pacific Islander
  • Hispanic or Latino
  • Multiracial 

 

What is a bone marrow transplant?

Bone marrow transplant is a life-saving treatment for people with blood cancers like leukemia and lymphoma, and other diseases like sickle cell anemia. 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 begin to function and multiply.

For a patient's body to accept these healthy cells, the patient needs a donor who is a close match. 70% of patients do not have a fully matched donor in their family and depend on the registry to find an unrelated bone marrow donor or umbilical cord blood.

How do I become a bone marrow donor?

The first step to become a bone marrow donor is to join the NMDP Registry. Doctors around the world search our registry to find matches 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).

How do I use the registration kit to collect a cheek cell sample?

When you join the registry, you will use our registration kit to give a swab of cheek cells. We will tissue type the sample you provide and use the results to match you to patients.

Once you join online, you will receive your kit in the mail. Instructions are included in your kit. 

What is my commitment if I join?

When you join the NMDP Registry, you make a commitment to:

  • Keep us updated if your contact information 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
  • Donate to any searching patient in the world who matches you
  • Be listed on the registry until your 61st birthday, unless you ask to be removed

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 delays for the patient.

How likely is it that I will donate to someone?

We cannot predict the likelihood that an individual member will donate because there is so much diversity of tissue types in the population. However, doctors request donors in the 18-35 age group 75% of the time. That's 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.

What is the donation process like?

Adult donors may be asked to donate in one of two ways:

Peripheral blood cell (PBSC) donation involves removing a donor's blood through a needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm.

Bone marrow donation is a surgical procedure in which liquid marrow is withdrawn from the back of the donor's pelvic bones using needles. Anesthesia is always used for this procedure, so donors feel no pain during marrow donation. Most donors feel some pain in their lower back for a few days afterwards.

Find an overview of the donation process

Can I get tested for a specific patient or family member?

When you join the NMDP Registry, you make a commitment to donate to any searching patient who matches you. 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 testing 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 testing done privately. You can contact the patient's transplant center or transplant doctor for more information.

I've already been tested for a family member. How can I add my results to the NMDP Registry?

Get a copy of your human leukocyte antigen (HLA) tissue typing lab report and call 1 (800) MARROW-2. You will need to fill out a health history form to verify you meet medical guidelines. You will also need to sign a consent form agreeing to be listed on the NMDP Registry. Once you are listed on our registry, we will contact you if you are identified as a possible match for a patient.

I think I may have already joined. How can I verify that I am on the registry?

NMDP Registry is the new name for the registry. Whether you joined the NMDP 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, you can contact us at 1 (800) MARROW-2.


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