FAQ
- Why is there a need for people to sign-up as bone marrow donors?
- If I registered a few years ago, do I need to register again?
- What is a bone marrow transplant?
- How do I become a bone marrow donor?
- What is the donation process like?
- Is there a cost to register as a bone marrow donor or to donate?
- What is my commitment if I join?
- Why does a person have to be 18 to join? Can't my parent sign the consent for me?
- I'm over 55. Why can't I join?
- If I sign-up as a bone marrow donor with DKMS, how likely is it that I will donate to someone?
- How are patients matched with donors?
- What is human leukocyte antigen (HLA) typing?
- Does ancestry or ethnicity affect matching?
- Can I register as a donor for a specific patient or family member and not for anyone else?
- What does DKMS stand for?
Q: Why is there a need for people to sign-up as bone marrow donors?
A: Thousands of patients with leukemia and other life-threatening diseases depend on finding matching donors who can save their life. Patients need donors who are a close genetic match. Even with a registry of millions, 6 out of 10 patients NEVER receive the lifesaving transplant they need. Donors of all ethnicities are needed if we are going to change this.
Q: If I registered a few years ago, do I need to register again?
A: If you signed-up as a bone marrow donor before, you do not need to sign-up again. You just need to keep your information updated with the donor center you registered with originally so they can contact you should you be a match for a patient.
If you are unsure whether you signed-up with DKMS, you can call us at + 1 (866) 340-DKMS (3567). If you are not sure whether you signed-up with another donor center, you can contact the Be The Match Registry® at +1 (800) MARROW-2. You can request a copy of your own tissue typing results after you join the NMDP.
Q: What is a bone marrow transplant?
A: A bone marrow transplant is a lifesaving 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 stem cells are transfused directly into the patient's bloodstream, where they can 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. Seventy percent of patients cannot find a matching donor within their family and depend on the national registry to find an unrelated bone marrow donor.
Q: How do I become a bone marrow donor?
A: The first step to becoming a bone marrow donor is to register with DKMS. In order to join the registry all you need to do is fill out an information/consent form and swab the inside of your cheeks to collect cells for tissue typing. Donors must be between the ages of 18 and 55, must meet the medical eligibility guidelines and be willing donate to any patient in need.
As a DKMS donor, your tissue type, along with your ID# is stored anonymously on the Be The Match Registry® (operated by the NMDP). The registry is searched by doctors trying to find matches for their patients. If a doctor selects you as a match for a patient, you may be asked to donate stem cells collected from your circulating blood (called PBSC donation) or to donate bone marrow collected from your pelvic bone (not the spine). You can register online here.
Q: What is the donation process like?
A: There are two ways to donate. The majority of donations do not involve surgery.
Peripheral Blood Stem Cell (PBSC) Donation:
The most common way to collect stem cells is via the donor’s bloodstream using a process called apheresis. To increase the number of stem cells in the bloodstream, donors receive daily injections of a synthetic protein called filgrastim for 4 days before, and on the day of the collection. On the day of collection the donor's blood is removed with a sterile needle from one arm and passed through a machine that separates out the blood stem cells. The remaining blood is returned to the donor through the other arm. PBSC Collection is a non-surgical, outpatient procedure that takes about 4-6 hours on 1-2 consecutive days.
While taking filgrastim, many donors experience flu-like symptoms such as headaches, bone and muscle achiness and fatigue. Most side effects subside within 48 hours of donating.
Bone Marrow Donation:
Liquid marrow is collected from the backside of the pelvic bone (not the spine) using a special syringe. Donors receive general anesthesia so no pain is experienced during the marrow extraction. This is a 1-2 hour, outpatient, surgical procedure. Many donors experience some pain, bruising and stiffness for up to two weeks after their donation. Within a week of donating, most donors are able to return to work, school and many regular activities.
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 for transplantation and will completely replenish within a few weeks, so you can save a life without giving up anything permanently.
The method used for donation depends upon the patient’s needs and is determined by the patient’s doctor. Registered donors must be willing to donate using either method.
Q: Is there a cost to register as a bone marrow donor or to donate?
A: It costs DKMS $65 to register one potential bone marrow donor. Because DKMS does not require new donors to pay their registration costs and does not receive Government funding, it is solely dependent on financial contributions from corporations, private foundations and individuals like you to support our lifesaving work. You can make a donation today .
There is no cost to the donor to donate. Costs will be covered by the patient’s insurance, or by the National Marrow Donor Program which operates the Be The Match Registry® or by DKMS. This includes costs for travel, meals, lodging or other necessary expenses. A donor’s insurance will never be used.
Q: What is my commitment if I join?
A: When you register as a bone marrow donor with DKMS, you make a commitment to:
- Be listed on the Be The Match Registry® until your 61st birthday, unless you ask to be removed
- Donate to any searching patient who matches you
- Keep us updated if your address 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.
- You have the right to change your mind about being a donor at any time. Should this happen, you must notify us immediately so we can remove your information from the registry. It is devastating to patients and their families should you wait to back out after you are a match.
Q: Why does a person have to be 18 to join? Can't my parent sign the consent for me?
A: We require volunteer bone marrow donors to be between the ages of 18 and 55, 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 be legally able to give informed consent. A guardian or parent cannot sign a release or give consent because unrelated marrow donation is a voluntary procedure and is not beneficial or lifesaving to the donor.
Q: I'm over 55. Why can't I join?
A: The age limit is not meant to discriminate. We 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.
Q: If I sign-up as a bone marrow donor with DKMS, how likely is it that I will donate to someone?
A: We cannot predict the likelihood because there is so much diversity in the population. 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 person on the registry who can save a particular patient's life so it’s important that you are committed to the possibility of donating.
Q: How are patients matched with donors?
A: Cheek cells are collected with a cotton swab upon registering. Then, the sample is tested for the DNA tissue type and added anonymously to the Be The Match Registry® so doctors can search for a donor who matches their patient(s).
Q: What is human leukocyte antigen (HLA) typing?
A. Human leukocyte antigen (HLA) typing is a DNA based tissue test used to match patients and donors for bone marrow transplants (BMT). HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. A close match between the donor’s HLA markers and the patient’s can reduce the risk that the patient’s immune cells will reject the donor's cells or that the donor's immune cells will attack the patient’s cells after the transplant.
Q: Does ancestry or ethnicity affect matching?
A. Ethnicity and heritage are very important factors. Patients are most likely to match someone of similar ethnicity or heritage. Potential donors with diverse ethnic heritage are severely lacking on the registry. Adding more ethnically diverse members increases the likelihood that all patients will find a lifesaving match. The registry needs more donors of all ethnicities but African American, American Indian or Alaska Native, Asian, including South Asian, Native Hawaiian or other Pacific Islander, Hispanic or Latino and Mixed Ethnicities are especially needed.
Q: Can I register as a donor for a specific patient or family member and not for anyone else?
A: When you sign-up as a bone marrow donor, you make a commitment to consider donating to any searching patient you might match. Donation is voluntary so 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 DKMS. If you would only consider donating to a specific patient, you will need to get tested privately and not join the registry. You can visit BoneMarrowTest.com for more information about private testing. You can contact the patient's transplant center or transplant doctor for more information. If you have any additional questions, please contact DKMS at +1 (866) 340-DKMS (3567), by e-mail at info@dkmsamericas.org.
Q: What does DKMS stand for?
A. DKMS is the acronym for "Deutsche Knochenmarkspenderdatei" meaning Bone Marrow Donor Center because it was founded in Germany.
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