Information package for those invited to confirmatory tests
The Stem Cell Registry Exists for Patients
The Stem Cell Registry, maintained by the Finnish Red Cross Blood Service, was established in 1992 and currently includes nearly 80,000 volunteer donors. A patient in need of a stem cell transplant may be a child or an adult, living in Finland or abroad. Less than one-quarter of patients find a suitable sibling donor. Most require help from an unrelated volunteer. Stem cell transplantation is performed when a patient suffers from a life-threatening blood disorder such as leukemia that cannot be cured with medication. Healthy stem cells collected from a donor replace the patient’s diseased bone marrow. A stem cell transplant is often the patient’s only hope for recovery.
Invitation to Further Testing
You are a member of the Stem Cell Registry and have been identified as a potential match for a patient in need of a stem cell transplant based on preliminary tissue type testing. We are inviting you for additional testing to confirm compatibility with the patient and to ensure your health allows for stem cell donation. This involves taking blood samples. Typically, several candidates are tested simultaneously for one patient to find the best possible match. Sometimes, only one suitable donor can be found worldwide. We do not disclose the number of candidates invited for further testing, as this should not influence your decision. If testing confirms that you are the best match, you will be invited to donate. To ensure a donor is found quickly, please contact us without delay even if you are currently unable or unwilling to participate, or if you wish to leave the registry. You can notify us by email at kantasolurekisteri@veripalvelu.fi. Any health-related concerns will be reviewed in more detail once you complete the health questionnaire we send.
Voluntariness and Anonymity
Stem cell donation is voluntary, and donors may leave the registry at any time. Make your decision independently and after careful consideration. Once a donor is selected and the donation date is set, the patient begins intensive pre-transplant treatments. A last-minute cancellation at this point may likely result in the patient’s death. Because of this, even though the donor has the right to withdraw their consent at any time before donation, the decision should be made as early as possible.
All personal data, test results, and other information are handled confidentially, and all personnel are bound by strict confidentiality. Your name and personal ID number will be shared only with the laboratory drawing the blood samples and later, if you are selected as a donor, with the physician conducting your health examination and the staff at the stem cell collection center. The identities of the donor and patient are kept confidential from each other.
Health Questionnaire and Contact
We have sent you a link to an electronic health questionnaire to assess your health and related factors. The questionnaire is fully confidential. Please answer truthfully. Its purpose is to ensure that stem cell donation is safe for you and that the transplant collected from you is safe for the seriously ill patient. Completing the questionnaire typically takes about 15 minutes. Please complete it fully. We will receive a notification once you have completed the questionnaire. We will then call you to review your responses and assess your suitability as a donor. You may also ask any questions you have – we are happy to help.
Blood Sample for Further Testing
If the health questionnaire reveals no obstacles to donation, we will schedule a time for your blood sample. Sampling will be arranged at your nearest Blood Service office or another laboratory according to your schedule. No fasting or special preparation is required. In addition to tissue typing, the blood sample will be tested for blood group, HIV, hepatitis B and C, cytomegalovirus, and syphilis antibodies. Donors are not compensated for the blood test, and travel expenses are not reimbursed.
After the Blood Sample
After the sample is taken, you may resume your normal activities. Typically, donor selection is communicated within four months of sampling. Please contact us if your health changes significantly or if you plan a long trip abroad. We will always inform you whether you have been selected as a donor. Selected donors will be contacted by phone. Other candidates will be informed by email, including if you are chosen as a backup donor or if your testing phase has ended.
If You Are Selected as a Donor
The patient’s physician selects the stem cell donor. In addition to tissue type, factors such as donor age, gender, cytomegalovirus matching and blood group are considered. The schedule depends on the patient’s condition, but we aim to accommodate your preferences regarding timing.
Two Donation Methods
Stem cells can be donated from the bloodstream or bone marrow. The method is primarily determined by the patient’s condition. We will inform you of the preferred method for the patient. When possible, the donor’s preference is also considered. Sometimes, the donor’s health examination may reveal factors that change the planned method. Stem cell collection takes place at either Helsinki or Turku University Central Hospital.
Collection from the Bloodstream
When collecting stem cells from the bloodstream, the donor receives white blood cell growth factor injections for 4–5 consecutive days before collection. This causes stem cells to multiply in the bone marrow and enter the bloodstream, from which they are collected similarly to blood donation. Typically, collection is done from veins in the elbow, but due to vein anatomy, a central venous catheter may be used, usually inserted into a neck vein by an anesthesiologist. Stem cell collection from blood does not significantly lower hemoglobin levels. The growth factor may cause bone pain due to increased cell production, which can be treated with regular painkillers. The growth factor is naturally present in the body in small amounts and has been used in patient care for years without any detected long-term side effects.
Collection from Bone Marrow
Bone marrow stem cell collection is performed under anesthesia. Bone marrow is aspirated with a needle in small amounts from the upper buttocks area of the pelvic bone, totaling approximately 300–1200 ml. The procedure lasts 1–1.5 hours. Bone marrow is self-renewing tissue, and new, functioning marrow quickly replaces what was removed. The collection does not affect the bone marrow’s ability to produce blood cells, even temporarily. Hemoglobin levels may drop temporarily but return to normal within a few weeks. The collection area may be sore for about a week. Needle marks may appear on the skin, but cosmetic effects are minimal and usually temporary. Some donors feel fatigued in the days following donation.
Sick Leave and Expense Reimbursement
Selected donors receive sick leave for the health examination day and again for about a week during donation. The principle of stem cell donation is to deliver a gift from an unknown to an unknown. Donation is voluntary, and the law prohibits payment for it. However, the registry reimburses all direct expenses related to donation, such as lost income from primary employment, accommodation and travel costs, and reasonable meal expenses. The registry also ensures comprehensive insurance coverage for the donor.
After Donation
Donors may inquire about the patient’s condition from the registry 18 months after donation, although information is not always available.
Patient’s prognosis after stem cell transplantation depends on factors such as the patient’s condition, disease, initial disease status, and age. Sometimes, the patient dies despite receiving the transplant. This is not due to the stem cell graft – the disease sometimes just turns out to be too severe. Even then, thanks to the donor, everything possible has been done for the patient. Every donor gives the patient the patient’s best chance to recover.