Frequently Asked Questions

Q. Is there a cost associated with registering as a donor?
A. It costs DKMS $65 to type one person's tissue, which is used to match the donor to the patient. DKMS does not require the donor to cover the typing cost; however we do rely on the support of individuals and corporations to help with funding.

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 if they would like to pay the tissue-typing cost when they join.

Any contribution you make to pay for tissue-typing costs is greatly appreciated and is tax deductible.

Q. What is my commitment if I register?
A. When you register as a potential donor, you make a voluntary commitment to:

• Be listed on the National 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 contact information changes

Q. How are patients matched with donors?
A. A cheek cell sample is collected upon registering. Then, they are tested for their DNA tissue type and added to the National registry (NMDP), so Doctors can look for a donor who matches their patient's human leukocyte antigen (HLA) tissue type. HLA are proteins - or markers - found on most cells in your body. The closer the match between the patient's HLA markers and yours, the better for the patient.

Q. How does a person's race or ethnicity affect matching?
A. Tissue type is inherited and therefore patients are more likely to match someone of their own race and ethnicity. Currently, there is a great need to recruit more donors who identify themselves as Black or African American, American Indian or Native Alaskan, Asian, Hawaiian or Other Pacific Islander, Hispanic or Latino, due to more varied tissue characteristics. Adding more diverse donors increases the likelihood that all patients will find a life-saving match.

Q. How are blood-forming stem cells collected?
A. Once you have been identified as a marrow donor there are two ways - both outpatient procedures - you can 'GIVE LIFE':

1. Peripheral Blood Stem Cell (PBSC) (Approximately 70%-80% of collections are performed this way)

This procedure, called apheresis, involves receiving daily medication for four to five days before the collection to increase blood stem cells in the bloodstream. The donor's blood is removed from one arm, passed through a machine that separates out the cells used in transplant, and returned through the other arm.

2. Marrow (not spinal) Tissue (Approximately 20%-30% of collections are performed this way)

The marrow cells that are so important to life accumulate in large numbers in the pelvic bone. Marrow tissue extraction is performed by giving the donor general or local anesthesia. Then, doctors insert special needles into the back of the pelvic bone where a small amount of marrow (containing stem cells) is extracted. Marrow is completely regenerated within a few weeks.

Q. What are potential side effects?
A. Marrow donors can expect to feel some soreness in their lower back for a few days or longer. Some donors have reported feeling tired, but most donors are back to their normal routine in a few days.

PBSC donors report varying symptoms which might include headaches, bone or muscle pain, nausea, insomnia, fatigue or flu-like symptoms while receiving injections. These effects disappear shortly after the collection process.

Q. What are the chances that I will become a donor?
A. Matching a patient is a rare opportunity to help save a life. We cannot predict an individual's likelihood because there is so much diversity in tissue types. If your tissue type is common, you may be more likely to match a patient, but there will also be more potential donors. If your tissue type is uncommon or rare, you may never match; or, you may be the only match for a patient with the same, rare tissue type. On average, about one in 130 DKMS donors will go on to donate. The important thing is to be committed to helping any patient if and when the need does arise.

Q. Can I get tested for a specific patient or family member?
A. When you register as a potential donor, you make a commitment to consider donating to any patient who is searching for their genetic twin. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, a late decision not to donate can be life-threatening to a patient, therefore we ask that you to think seriously about the commitment involved before deciding to become a potential life-saving donor.

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.

If you have any additional questions, please contact DKMS at 1-866-340-DKMS (3567), by e-mail at info@dkmsamericas.org.