You are invited to participate in the DKMS US donor database. We ask you to read this form and ask any questions you may have before agreeing to enroll as a potential bone marrow or peripheral blood stem cell donor.
When you register as a potential donor, your tissue type and other biological factors are listed on the registries and compared with the tissue types of patients in need of a transplant. If you are identified as a potential donor for a patient, additional testing is required to determine if you and the patient are a close enough match for a transplant. If you are determined to be the best available match, you may be asked to donate bone marrow or peripheral blood stem cells.
By signing this form, you are registering as a potential bone marrow and peripheral blood stem cell donor. You are also giving DKMS US and the DKMS Group gGmbH (legally independent companies, but acting as joint controllers as far as necessary) the permission to
You will be listed pseudonymously on internal, national, and international donor registries, accessible for patients worldwide. Your name will not be revealed on the registries; only information necessary to perform the unrelated donor search will be revealed.
You are further giving DKMS US permission to collect cheek cells from the inside of your mouth using cotton-tipped swabs to determine your tissue type as well as other biological factors (e.g. KIR, CCR5, MICA, MICB, blood group AB0 and Rh, CMV status) that are important for donation; to store your cheek swab samples for as long as further testing may be needed; and to conduct further testing of your sample to determine if you match a searching patient. Pseudonymized data may be used in the framework of scientific analyses and research aimed at improving the treatment of patients within the DKMS organizations. These activities will be carried out at partner laboratories of DKMS US, some of which may be located internationally.
The chance that you will be selected to donate depends on your tissue type. It is rare to find matching donors, so there is a chance you may never be matched at all. Your donor profile will be made available for global searches until you reach your 61st birthday. After that, the reference to your person will be deleted, unless there are longer legal storage obligations (e.g. if a donation has been made).
You are asked to read carefully this entire Donor Consent, and to pay special attention to the exclusion criteria listed in Section 4. These criteria are designed to protect you, as well as to ensure that it would be safe to use your bone marrow or peripheral blood stem cells for a transplant.
You will be asked to provide your personal details and contact information and sign the Donor Registration Form, agreeing to register as a potential bone marrow or peripheral blood stem cell donor in the DKMS US database.
A collection of cheek cells from inside your mouth using cotton-tipped swabs will be taken. The sample will be sent to a laboratory to determine your tissue type as well as other biological factors. If you are identified as a potential match for a patient, additional testing may be needed.
You may be asked if you would like to cover all or a portion of the cost to type your tissue, but it is not mandatory that you pay. If you choose to donate financially, thank you for your additional support of DKMS’s lifesaving work! If you would like to make a donation, please visit dkms.org/give.
You are eligible to register if you are:
And do not have:
DKMS US representative or volunteer before you register.
DKMS US expects that you will keep us informed of changes in your contact information (changes in name, address, phone, etc.). If your health changes after you join, it is possible that you may no longer be eligible to donate bone marrow or peripheral blood stem cells, and you should notify DKMS US.
You may be periodically contacted in an effort to keep your information updated and to provide you with updates and news about DKMS US. You may receive one or more automated texts at the cell phone number provided here from or on behalf of DKMS US. Frequency will vary. Message & Data rates may apply. Text STOP to cancel.
Registering as a potential donor is not expected to benefit you directly in any way. If you donate bone marrow or peripheral blood stem cells for a patient, the patient may benefit from the transplant. At each step, there may be additional risks and benefits related to that particular step, which will be explained to you in written documentation provided at such stage, and you will be given the opportunity to continue or to withdraw.
HOW ARE STEM CELLS DONATED?
The vital stem cells are located in the human bone marrow. All blood cells develop from these special stem cells. A particularly large number of these cells are present in the pelvic bone. If, after a medical examination, the suitability as a donor is established, there are two ways to donate stem cells (for more information see www.dkms.org/donor-info/stem-cell-donation):
Peripheral blood stem cell collection
Bone marrow collection
If you decide to participate as a potential donor, you are free to withdraw at any time. If you withdraw, your tissue type will no longer be available for searching patients. To withdraw, you must contact DKMS US by phone at 212-209-6700 or by email at info@dkms.org. This consent is valid for the entire time that you are registered in relation to this signed consent form. If you withdraw and chose to register again, you must sign a new consent form at that time.
You will not be paid for participating as a potential donor, nor will you be paid if you donate. You will not be charged for any expenses resulting from further testing to identify you as the best available donor or for the collection of your bone marrow or peripheral blood stem cells.
DKMS US (40 Fulton St., New York, NY, 10038) and the DKMS Group gGmbH (Kressbach 1, 72072 Tübingen, Germany) are partly individually and partly jointly responsible and have put procedures in place to keep your personal information and donor status private and confidential. Your personal identifying information will not be disclosed to the donor registries or transplant centers. If you are selected as a potential matching donor for a searching patient, your personal identifying information and contact information will be used in attempting to locate you. We will only use your data in accordance with your consent, or as strictly mandated by law or good clinical practice. We will never sell you data.
If you have questions or concerns about participating as a potential donor, please contact DKMS US at any point in the process. You can contact DKMS US by phone at 212-209-6700 or by email at info@dkms.org.