Frequently Asked Questions
What is The HLA Registry and what does HLA stand for?The HLA Registry at Community Blood Services is one of more than 50 donor centers affiliated with the National Marrow Donor Program’s Be The Match Registry. As the largest non-governmental donor center with the registry and the only donor center in New Jersey, the HLA recruits new members to the Be The Match registry so that patients worldwide can find their marrow matches. The HLA also coordinates the donation process if a member is found to be the perfect match for a patient. HLA stands for human leukocyte antigen, the genetic information encoded on white blood cells What is a bone marrow or stem cell transplant?
A bone marrow transplant is a lifesaving treatment for people with leukemia, lymphoma and many other diseases. Prior to transplant, patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then a donor’s healthy blood-forming cells are put 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 Be The Match registry for an unrelated bone marrow donor.
How can I become a bone marrow donor?
If you are age 18 to 44 you can register at Community Blood Services in Montvale, NJ by calling 1-800-336-3363 to make an appointment, or you can register at a bone marrow registration drive. click here to find upcoming drives. You will be asked to first sign a registration form then have a tissue sample collected from the inside of your cheek using the buccal swab method. Once you are registered please remember to contact us to update your personal information whenever there are any changes.
If you are between the ages of 18 and 60 you also can click here to join the Be The Match registry online.
If you are between the ages of 45 and 60, click here to register online at Be The Match. Complete your registration form online and use promo code HLAREGISTRY. Your cheek swab kit will be mailed to you. When you return the completed swab kit to Be The Match you will be entered onto the Be The Match registry. You will be asked for a $100 tax-deductible contribution to cover your registration.
To learn more, you can speak to someone from The HLA Registry by calling 800-336-3363 or click here to contact us by email.
I think I may have already joined. How can I verify that I am on the Registry?Once you join through The HLA Registry, at Be The Match or at a bone marrow drive, you are part of the same national registry servicing patients all over the world. 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 call Be The Match at 1-800-MARROW-2 or email www.bethematch.org by clicking here. Why does an individual have to be between 18 and 60 years old to be a donor?
The age limit is not meant to discriminate. The NMDP requires volunteer bone marrow donors to be between the ages of 18 and 60, which is standard medical practice. An individual must be 18 to donate because marrow donation is a surgical procedure and the person undergoing the procedure must legally be able to give informed consent. A guardian or parent cannot sign a release or give consent because unrelated bone marrow donation is a voluntary procedure and is not beneficial or lifesaving to the donor.
The Be The Match Registry must use chronological age to determine eligibility to protect the safety of the donor and provide the best possible treatment for the patient. With age comes a small increase in the risk of side effects from anesthesia.
Why must individuals who are 45 to 60 years old register online?As a nonprofit organization, Be The Match continues to ensure that it is using its funding to best serve patients. As of October 1, 2012 the age guidelines for registration were changed. Be the Match sharpened its focus on adding younger registry members so the registry can best serve the patients in need. While only 60 percent of Be The Match registry members are currently between the ages of 18 and 44, transplant physicians request individuals in that age range more than 90 percent of the time so more donors in that age range are needed. In addition, studies have shown that patient survival rates increase when a donor is between 18 and 44 years of age.
Does race or ethnicity affect matching?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 simply aren’t enough registered donors of diverse racial and ethnic heritage. Adding more diverse donors to the registry increases the likelihood that all patients will find lifesaving matches.
Donors of these backgrounds are especially needed:
- Black or African American
- American Indian or Alaska Native
- Native Hawaiian or other Pacific Islander
- Hispanic or Latino
- Mixed heritage
Why is there a cost associated with joining the registry?
When you join the registry you may or may not be asked to pay the cost of your tissue typing. Cost depends on resources and support available. Your tissue type is used to match you to patients and is identified by testing a sample of cheek cells. It costs approximately $100 to add a member to the Be The Match Registry.
Sometimes, a drive 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. To help cover the cost of tissue typing for new donors, click here to contribute.
What is my commitment if I join the registry?
When you join, 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 in the world 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.
Donating is always voluntary. You have the right to change your mind about being a member at any time. 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.
If I join the registry, how likely is it that I will be called to donate?
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. The likelihood of being identified as a potential match is 66 to 75%. The likelihood of actually donating is approximately 1 out of 540.
If we call to say you are a match for a patient, please respond quickly; the patient’s life may depend upon your response.
What is the donation process?Adult donors may be asked to donate in one of two ways:
For an overview of the donation process click here.
- Bone marrow donation is a surgical procedure done under general or regional anesthesia so the donor experiences no pain during the collection process.
- Peripheral blood stem cell (PBSC) donation involves removing a donor’s blood through a sterile 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.
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