Donor Registration Terms
INVITATION AND PURPOSE You are invited to participate in the DKMS™ donor database. Our primary purpose is to identify unrelated donors for patients in need of a marrow transplant who have no suitable matches within their family. We ask you to read this form and ask any questions you may have before agreeing to enroll as a potential marrow donor or peripheral blood stem cell donor. DKMS™ works with hospitals that treat patients with life-threatening blood diseases that can be treated with a marrow transplant. When a volunteer registers as a potential donor, his/her tissue type is listed on the donor database and is compared with the tissue types of patients in need of a transplant. If a volunteer donor is identified as a potential donor for a patient, additional testing is required to determine if the volunteer donor’s and patient’s tissue types are a close enough match for a transplant. If a volunteer donor is determined to be the best available match for a patient, he/she may be asked to donate marrow or peripheral blood stem cells. By signing this form, you are registering as a potential marrow or peripheral blood stem cell donor. You are also giving DKMS™ the permission to (i) collect, retain and use your personal identifying information and your contact information for the purpose of contacting you regarding your participation as a potential donor, as well as marketing, fundraising and volunteer-related initiatives conducted directly or through partners, and (ii) share and store such information amongst its affiliated entities, some of which may be located outside of the United States. You will be listed anonymously on national and international donor registries, such as the federally authorized C.W. Bill Young Cell Transplantation Program, the Be the Match Registry® (operated by the NMDP), and the ZKRD (German bone marrow donor registry, 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™ permission to collect cheek cells from the inside of your mouth using a cot¬ton-tipped swab to determine your tissue type as well as other biological factors that are important for donation; to store your cheek swab sample for as long as you remain registered; and to conduct further testing of your sample to determine if you match a searching patient. These activities will be carried out at partner laboratories of DKMS™, some of which may be located internationally. Blood stem cells grow into mature blood cells and can be collected from either the bone marrow or the blood stream. The chance that you will be selected to donate depends on your tissue type. It is important for you to know that if you are selected as a donor, marrow or peripheral blood stem cell donation may require approximately 30 to 40 hours of your time.
PROCEDURES FOR PARTICIPATING IN THE DKMS™ DONOR DATABASE You are asked to read carefully this entire Donor Registration Terms, 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 marrow or peripheral blood stem cells for a transplant. Then you will be asked to provide your personal details and contact infor¬mation on the Personal Details Section and sign the Signature Section, agreeing to register as a potential donor on the DKMS™ database. Then a collection of cheek cells from inside your mouth using a cotton-tipped swab will be taken. The sample will be sent to a laboratory to determine your tissue type as well as other biological factors. 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. Your tissue type will be included on the list of potential donors. Any portion of the sample not used for initial tissue typing may be stored for future testing to determine if you could donate for a searching patient. If you are identified as a potential match for a patient, additional testing may be needed. If possible, the stored sample will be used for this testing; however, you may be asked to provide an additional cheek swab or blood sample.
POSSIBLE RISKS AND BENEFITS OF REGISTERING AS A POTENTIAL DONOR Registering as a potential donor is not expected to benefit you directly in any way. If you donate 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.
REQUIREMENTS FOR YOUR CONTINUED PARTICIPATION Your participation continues until your 61st birthday unless you ask to be removed or it is determined that you are no longer eligible. DKMS™ 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 marrow or peripheral blood stem cells, and you should notify DKMS™. You may be periodically contacted in an effort to keep your information updated and to provide you with updates and news about DKMS™.
You are eligible to register if you are:
• Between the ages of 18 and 55
• In good general health
• Willing to donate to any patient in need
• Not already registered
• Not in any branch of the U.S. military - active duty and reserve personnel are required to register with the C.W. Bill Young Department of Defense Marrow Donor Program.
And do not have:
• History of heart surgery or heart disease
• Autoimmune disorders such as lupus, rheumatoid arthritis, multiple sclerosis or fibromyalgia
• Sleep apnea, breathing problems or severe asthma (daily inhalers acceptable)
• Diabetes requiring insulin or injectable medication
• Kidney or liver disease
• History of strokes, including TIA
• Chronic or severe neck or back problems
• Epilepsy or other seizure within one year
• History of blood clotting or bleeding
• Personal history or cancer (exceptions: melanoma, breast, bladder, cervical [stage 0, in situ] and cured localized skin cancer such as basal cell or squamous cell carcinoma)
Potential donors must be at least 4’10” and weigh more than 105 pounds, but not exceed a maximum of BMI 40.
VOLUNTARY PARTICIPATION AND WITHDRAWAL 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.
REIMBURSEMENT AND COSTS TO YOU 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 marrow or peripheral blood stem cells.
CONFIDENTIALITY DKMS™ has put procedures in place to keep each potential donor’s personal information and donor status private and confidential. Your tissue type and stored cheek swab sample will be identified by a code and will be stored separately from the personal identifying information that you provide when registering to be a potential donor. Your personal identifying information will not be disclosed to the Donor Registries or Transplant Centers. Also, your personal identifying information will not be disclosed for any purposes other than those identified in this consent form without your further consent. 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.
POTENTIAL ADDITIONAL REQUESTS As a volunteer donor, you may be contacted about donating other types of blood products, such as whole blood or white blood cells for a patient, or asked if you would like to participate in a research project. If you are contacted for one of these types of requests, you will be given more information and asked to sign another consent form. You are free to say no to any of these requests.
QUESTIONS OR CONCERNS If you have questions or concerns about participating as a potential donor, please contact DKMS™ at any point in the process.