Bone Marrow

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?

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 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
  • Asian
  • Native Hawaiian or other Pacific Islander
  • Hispanic or Latino
  • Mixed heritage

I need to have my HLA (human leukocyte antigen) typing done for my friend/relative who needs a transplant but I do not want to be part of the registry. How do I do this?

HLA tissue typing can be done at private laboratories. You may want to check with the patient’s transplant physician as to the preferred method of obtaining your HLA typing. The Kashi Clinical Laboratories is one laboratory that offers private testing.

You may use the tissue typing to join the registry later if you wish. Download the donor consent/registration form and mail it to The HLA Registry with a copy of your tissue typing results. We will then enter you into the NMDP database and you will be available to help anyone worldwide.

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:

  • 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.

For an overview of the donation process click here.

Will I have to go to a hospital near my recipient to donate?

No, you will be able to donate at a Be The Match affiliated collection center as close to where you live as possible. Once your stem cells or marrow is collected it is hand carried by a courier to your recipient’s transplant center.

Cord Blood

What are Stem Cells?

Stem cells are found concentrated in bone marrow and umbilical cord blood. Stem cells make the three types of blood cells that we need to survive: red cells to carry oxygen throughout our bodies, platelets to prevent bleeding and white cells to form our immune systems and guard us against infection. When stem cells are damaged or destroyed during aggressive treatment for cancer or other diseases, they can be replaced through bone marrow or cord blood transplants.

How Are Stem Cells Collected and Stored?

Stem cells are collected from the umbilical cord after your baby’s birth. The registration process is easy and the collection, which only takes about five minutes, is safe for you and your baby. Your physician, midwife, nurse or trained technician will collect the cord blood at participating hospitals throughout the northeast. The blood is collected in a blood bag that is packaged in a specially designed container and delivered to our facility to be processed, stored and monitored until needed.

The blood is processed using an automated technology system called SEPAX. Once processing is completed, the cord blood unit is stored in liquid nitrogen freezers and monitored until needed. The tissue type of the cells in the unit is listed on the National Marrow Donors Program (NMDP) registry, which can be searched by transplant doctors worldwide.

Why are More Ethnically and Racially Diverse Donors Needed?

Tissue types are inherited, so patients are more likely to match someone who shares their racial or ethnic heritage. As the need for transplants in diverse communities continues to grow, more ethnically and racially diverse donors are also needed from African American and Black, Hispanic, Latino, Asian and Native American communities to increase the chances of finding lifesaving matches for patients in need in those communities. A key goal of the NJCBB is to increase education and recruitment efforts within the State of New Jersey’s diverse communities in an effort to save more lives.

What is the NJCBB?

In 2005, New Jersey became the first state in the U.S. to create a publicly funded umbilical cord blood and placental stem cell bank and education program. Community Blood Services’ cord blood program was designated as an official partner responsible for cord blood collections in the northern part of the state. In 2007 Community Blood Services took over all operations of the New Jersey Cord Blood Bank (NJCBB), becoming the state’s only public cord blood bank for the State of New Jersey. As leadersin the cord blood field, we adhere to the highest licensing and accreditation standards. Our program is operated by our highly certified staff, which has extensive experience in the field of stem cells, and is overseen by our distinguished Scientific/Medical Advisory Panel, comprised of experts in the fields of stem cell biology, transplantation medicine, pediatrics, and maternity medicine.

Hereditary Hemochromatosis

What is Hereditary Hemochromatosis?

Individuals with Hereditary Hemochromatosis absorb too much iron. This can result in toxic levels of iron in tissues and major organs. A genetic disease, it can develop into other major diseases such as diabetes, heart trouble, arthritis, liver disease and neurological problems if not diagnosed and treated. Symptoms include chronic fatigue, joint pain, loss of libido or impotence, abdominal pain and shortness of breath.

Who is at risk for Hereditary Hemochromatosis?

It is estimated that 1 in 200 people has the disease or is a carrier for it. Males of northern European descent, those with a family history of premature death from heart attack, liver disease, diabetes and arthritis; and post-menopausal women with the same ancestry and family history as previously mentioned.

What is the treatment?

The amount of iron in the body can be decreased effectively by removing red blood cells that naturally contain large amounts of iron. Those with Hereditary Hemochromatosis often need regular phlebotomies to remove the excess iron. In the past, this was often done at a doctor’s office or blood center and the collected blood was then discarded. But because of a change in the guidelines by the U.S. Food and Drug Administration (FDA), Community Blood Services now can test and process these donations and many times use the blood for patients in need.

Why can individuals with Hemochromatosis now be blood donors?

Community Blood Services has received approval from the FDA and NJ DOH to begin collecting blood from those diagnosed with Hereditary Hemochromatosis. The FDA is allowing us to make those units that meet all eligibility requirements available for transfusion to patients in need as long as the results of all required tests are negative. If suitability requirements are not met, the blood will be safely destroyed.

How often will someone with Hemochromatosis be able to donate?

The frequency of donations should be determined by the individual’s physician based on the individual’s iron level and medical status.

Is an appointment needed?

An appointment is not necessary provided you have a Community Blood Services Physician’s Request for Plebotomy Form, which can be found on this website, or a doctor’s prescription.

What is the process for donating?

Upon registration, always identify yourself as a Hereditary Hemochromatosis donor. A donor with Hemochromatosis should plan to spend about an hour at the donor center. A health-care professional will ask the individual to fill out a registration form with medical history questions and check the donor’s pulse, blood pressure and iron level. The actual donation will take about 30 minutes. Then the individual will rest for a few minutes and have juice and a snack.

Can Hereditary Hemochromatosis be transmitted via blood?

Hereditary Hemochromatosis cannot be transmitted by a blood donation because it is a genetic disorder and therefore not contagious. The blood donated by individuals with Hemochromatosis is as safe as that donated by those without Hemochromatosis.

Is there a charge?

There is no charge, even if the blood you donate is not used for transfusion.

What if I have additional questions?

Please Call the at 201-444-3900, Monday – Friday, 7:30am – 3:30pm, and ask for the Special Clinical Services Department.

Why is donating at Community Blood Services a win-win situation?

In the past, blood collected from Hemochromatosis patients was collected and destroyed. As a result of the new regulations we cannot only help the patient with this disease by offering regular phlebotomies to decrease the amount of iron in their bodies, they can feel good about their blood saving another’s life.

Where can I find related information?

Automated Blood Donation

Who can make an Automated Donation?

  • Male (minimum criteria)
    • Weight: 130 pounds
    • Height: 5’1″
  • Female (minimum criteria)
    • Weight: 130 pounds
    • Height: 5’5″

What are the advantages of Automation for donors?

  • The most-needed blood products can be collected
  • A smaller needle is used
  • Less blood is removed than during a whole blood donation
  • One donation can save the lives of multiple patients
  • Donors feel better because fluid is replaced during their donations
  • The waiting period until the next donation is longer (112 days) which means fewer trips to the blood center and fewer telemarketing calls

What are the advantages of Automation for patients?

Automated donations ensure that the blood components patients need come from fewer donors, which decreases the likelihood of transfusion reactions that can occur from multiple donor products.

What is an Automated Donation Process?

During your donation, blood is drawn from one arm and channeled through a sterile, single-use tubing set to an automated system. The automated system separates and collects the most needed components and then safely returns the remaining blood components back to you

How do you ensure a safe procedure?

Donor safety is our top priority. Automated collections are very safe. The process uses a disposable, sterile, single-use needle and tubing set. Also, the automated system is designed specifically to customize the products collected from you to assure you do not give too much blood.

How does the program work?

By knowing daily patient needs and using automated blood collection technologies, we are able to tailor your blood donation to local demands. When customizing your donation we consider factors like your blood type and how many times per year you donate.

How does your Automated Donation help patients?

Platelets
are essential for blood clotting. They are routinely needed to support cancer therapy, open-heart surgery, blood disorders and organ transplants. Platelets must be transfused within 5 days, requiring the supply to be constantly replenished. Donors can give platelets up to 24 times per year.
Red Blood Cells
carry oxygen to all parts of the body. They are most needed after significant blood loss through surgery or anemia. Donors can donate red blood cells up to 4 times per year. O negative is the universal red cell donor.
Plasma
is the liquid portion of the blood containing critical clotting factors. Plasma is used to treat patients with certain bleeding disorders and for plasma exchanges. Plasma can be given every 30 days. AB is the universal plasma donor.

What is the difference between Whole Blood and Automated Donations?

When you donate whole blood, the unit is separated into its three main components: red blood cells, platelets, and plasma. Surprisingly, it takes the combined efforts of six whole blood donors to produce ONLY ONE unit of transfusable platelets.
Automated blood donations are the most efficient since you, as ONE person making ONE donation, can give full transfusable units of those components most needed by patients.

Bloodlinks Rare Donor Program

What is the purpose of Community Blood Services’ BloodLinks Program?

BloodLinks ensures that all patients in our diverse community have access to blood products that have been extensively tested and uniquely matched for them whenever they might need them.

How do I know if I am a BloodLinks donor?

If it’s been determined that your blood has a combination of unique antigens or lack of specific antigens that will match, you will receive a letter with a blue tag indentifying you as a BloodLinks donor. We encourage you to donate on a routine basis to help maintain our inventory and ensure your special blood type is always there should a patient need it. When scheduling your appointment, identify yourself as a “BloodLinks” donor so your donated blood will be tagged and labeled accordingly.

What is the difference between a BloodLinks’ donor and a donor with another more common blood type?

For blood transfusions, patients are matched with donor blood based on their major blood groups, referred to as “ABO” and “Rh” blood types: O+ O- A+ A- B+ B- AB+ AB
An estimated 5% of patients will need to find blood that is an even more specific match and lacks certain antigens against which the patient has developed antibodies. Providing incompatible blood for transfusions can cause life-threatening reactions.
Community Blood Services tests for the absence of such antigens, referred to as screening or testing for rare blood. We need blood donations from more multi-cultural donors to maintain a diverse inventory of antigen-negative blood.

What exactly is an antigen?

An antigen is simply a protein found on the surface of red blood cells. There are over 250 different antigens that can be recognized by the body’s immune system.

Why is my blood unique?

Just like your hair and eye color were inherited from your parents, your unique (or rare) blood and its antigens were also inherited from them. That’s why, for example, it is very difficult to find a rare blood type needed for an African American patient that did not come from an African American donor.

Why is it important to indicate my ethnicity when I donate?

Antigens are inherited traits. Therefore, the antigen match for an Asian patient will likely come from an Asian donor. Many of our sickle cell patients need units that lack a combination of certain antigens or antigens that are common in other populations. Donors of African-American descent are more likely to have red cells lacking these mentioned antigens than any other donor populations

Why am I just now learning I have rare blood?

We test from a pool of donors to determine antigen status. Since the testing is largely driven by patient and inventory needs, you may not find out you are a rare donor the first time you donate but only after multiple donations.

What do I do once I have been identified as a donor for the BloodLinks rare donor program?

Contact our telerecruitment department at 201-251-3703 or toll free at 866-228-1500 to schedule your next donation. If possible, bring your BloodLinks blue tag with you when you come in to donate and present it to your collections specialist. The more frequently you are able to donate, the more lives you can help save!

If I have rare blood, does everyone else in my family have rare blood?

Not necessarily, but the chances are higher that will have rare blood, especially your brothers and sisters.

Should I encourage family members to donate blood and get tested to see if they have rare blood?

Absolutely, they could be lifesaving matches for someone in need!

Should I be worried that I have rare blood?

Not at all, there is nothing wrong with your blood. You should be aware that your blood is special, however, and it may be difficult to find should you or someone else with the same rare antigens need a transfusion.

Who might need rare blood?

Patients who are regularly transfused, especially those with sickle cell disease, leukemia or thalassemia, can easily form antibodies (immune responses) to some red cell antigens. Once antibodies form, patients require very extensively and uniquely antigen-matched transfusions to prevent more antibodies. Others who require rare blood may include pregnant women, newborn infants, or patients undergoing chemotherapy.

What could happen if rare blood is needed but not found?

The medical complications can be very serious and, possibly, fatal. A transfusion of incompatible blood can cause grave harm to someone who is already weakened by disease or injury.

If my blood is so rare, why should I donate it at all?

We urgently need you to help us maintain an adequate supply of your special, rare blood type for the patients who need it. Because your blood is special, it is specially marked and stored and held for anyone who needs it. Some donors may lack an antigen that 99% of the population has. Units from the latter type of donors will be processed for freezing and can be stored for years until someone needs it, including you.

Should I wait to be called to donate?

It is not required but rare blood donors are encouraged to call the BloodLinks coordinator at 201-251-3703 or 866-228-1500 to schedule appointments. Remember you can donate blood every 56 days (up to six times a year) if you are feeling well and healthy or every 111 days if you donate double red cells.

Should I also donate platelets?

Because you are a rare blood donor, it is very important that we collect your whole blood or red blood cells, although you may be able to make an automated collection where you can donate platelets and red cells all the same time. The BloodLinks coordinator can make those arrangements for you.

What else can I do as a rare blood donor?

You can help create awareness of the need for rare blood by asking your family members to donate blood and sponsoring a blood drive within your community. To sponsor a blood drive, call 201-705-1603.