On average, one in three stem cell transplants in Finland is donated by a close relative of the patient (a sibling, parent or child whose tissue type is sufficiently compatible with the patient’s tissue type). In such cases, the Stem Cell Registry doesn’t engage in the search for a donor, and the donor typically isn’t a member of the Registry.
Often, however, both family members and the Stem Cell Registry are searched simultaneously for a potential donor. By becoming a member of the Registry, you can help patients for whom a donor from the Registry is a better choice than a donor from their family, and patients for whom suitable donors are not found from within the family.
A member of the Stem Cell Registry must be prepared to help any patient in need of a stem cell transplant, whether in or outside Finland. When a friend or a family member needs a stem cell transplant, many of us wish to help by volunteering to become a donor. However, the Registry can’t be joined for the purpose of helping a specific patient. The suitable donor is always chosen based on the patient’s tissue type. When a patient requires a stem cell transplant, the first step is always to examine family members to see if they are suitable donors.
Common back problems of muscular origin or due to physical activity and mild scoliosis don’t prevent you from joining the Registry.
If you have a bulging intervertebral disc, have had back surgery or have recurrent back problems that restrict your daily activities, you won’t be able to join the Registry.
The spinal cord and bone marrow are sometimes confused with each other. Your spinal cord is a bundle of nerves running through your spine, which protects them. Bone marrow, on the other hand, is situated in the core of your big bones, such as your femur and pelvic bones, where your blood cells are made. Blood stem cells are collected from the marrow of the pelvic bone. This operation does not touch the interior of the spine; instead, it penetrates the low back at the top of the hips, at the iliac crest. In other words, there is no risk of paralysis.
Stem cell donors get about a week’s sick leave. When you donate bone marrow, the sick leave is taken after the bone marrow collection, and when you donate stem cells that are collected from your blood circulation, the sick leave is taken before the stem cell collection.
No, hypothyroidism doesn’t prevent you from joining the Registry.
Yes, rheumatism prevents you from joining the Registry.
No, neither smoking nor using snuff prevents you from joining the Registry.
No, taking medication for either cholesterol or blood pressure doesn’t prevent you from joining the Registry.
Antidepressants don’t prevent you from joining the Registry, but your illness should be under good therapeutic control.
If you already have joined the Registry but cannot or do not want to donate stem cells, you should consider resigning your membership. It is important that people in the Registry are committed and prepared to help if they are asked to do so. Although a donor has the option of withdrawing from the donation process immediately before the donation, doing so may delay the treatment of the patient and even lead to the loss of the patient’s life. Therefore, please consider upon joining if you are really committed to helping.
Resigning from the Stem Cell Registry can be done by contacting the Registry. You may do this by phone on 029 300 1515 or by emailing us on kantasolurekisteri (at) veripalvelu.fi. You don’t need to say the reason you are resigning, but you may do so if you want to.
After bone-marrow collection from the blood stream you have to wait for 4 months before blood donation. If the bone-marrow is collected from the pelvis, you have to wait for 6 months.
The donor will receive all the necessary care for treating pain and will have the opportunity to discuss the issue in advance, in connection with the medical examination. During the days following bone-marrow collection from the pelvis, the operation may manifest itself as a pain in the back which, in the light of experience, will subside with ordinary painkillers. Bone-marrow collection from the blood stream is always preceded by growth factor injection treatment, which may cause the donor to have muscle aches similar to those associated with flu. Such aches can also be subdued with ordinary painkillers. However, sensitivity to pain is individual and varies from one donor to another.
Donation of stem cells is on a voluntary basis to help patients and donors do not receive payment for the donation itself. EU directives also prohibit trade in organs and tissues.
For a donor who is identified via the Stem Cell Registry, all actual expenses incurred by the donation are compensated for, including travel and accommodation costs, meals, and loss of income from full-time work. As a rule, expenses are reimbursed retrospectively, but, for example, tickets can be purchased by the Registry if necessary, making it unnecessary for the donor to buy them.
The Finnish Stem Cell Registry was established in 1992. During its existence, a donor has been found in the Finnish Registry for more than 800 patients. While most patients are Finns, Finnish donors also help patients outside Finland every year. Each year, 30 to 50 members of the Registry donate blood stem cells.
The number of stem cell transplants varies annually, but the range has been 150 to 170 per year for the past few years. The largest group is patients with leukaemia, but other severe blood disorders, such as severe red blood cell disorders and disorders of the body’s immune system, are also treated.
If you are relocating only temporarily, you should make the change of address notification directly to the Registry. This will ensure that your contact information will remain up to date. You can remain a member in the Registry although you no longer live in Finland. If you are relocating permanently, you should contact the Stem Cell Registry, enquiring about possibilities for transferring your donor information to a stem cell registry in your new country.
If you have several allergies with very severe symptoms, you shouldn’t join the Registry.
If you have celiac disease, you won’t be able to join the Registry.
Donors’ contact information as well as information on their tissue types, blood group and infection test results are recorded in the Registry. The Registry also contains information on the donor’s basic health, such as medications, height, weight, smoking and pregnancies.
The recovery percentage of patients varies depending on the disease and initial situation. Of adults 50–70% will recover, and of children 60–90% will recover, depending on the disease. The most common reasons for loss of a patient are a relapse of the disease and the complications related to stem cell transplants (graft-versus-host disease and infections).
To support transplants, new kinds of cellular therapies are being developed to be used in conjunction with stem cell transplants. These therapies will be used in the treatment of infections, leukaemia relapse and graft-versus-host disease. Improved medications are also being developed for these problems.
Research is also being carried out to learn how to manipulate the transplant itself, enhancing properties that destroy leukaemia and removing cells that give rise to graft-versus-host disease. Stem cell transplants will have fewer long-term effects.
Collection of stem cells has been concentrated in the Meilahti Hospital, which is part of the Helsinki and Uusimaa Hospital District. We will reimburse the donor for travel and accommodation expenses, as well as for loss of regular income.
The researches have shown that the age of the stem cell donor affects strongly to the success of treatment. The younger the donor is, the better results can be achieved.
You can be a member of the Registry until your 56th birthday. However, it is unlikely that a member above the age 35 will be selected as a donor.
One of the fundamental principles of the Stem Cell Registry is strict anonymity between the patient and donor. The idea is identical to blood donation: the donor gives a gift that the hospital gives to a patient in need. Anonymity also highlights the fact that all patients are equal, whether they are children or adults or live in or outside Finland.
Likewise, the donor might feel uncomfortable knowing about the patient’s condition. For example, if the patient does not survive a stem cell transplant, the donor may feel being personally responsible for the loss of the patient. On the other hand, the patient might also feel indebtedness if he or she knew the donor.
Obese individuals (with a body mass index, or the BMI, over 35) and people with a weight less than 50 kg cannot join the Registry. For obese individuals, anaesthesia poses a greater risk than for other people, preventing them from joining the Registry. Collecting a sufficient number of stem cells to enable the treatment of a patient may not necessarily be possible for individuals who are small in size.
In addition to the safety of the recipient of the stem cell transplant, the criteria for joining the Registry always take account of the donor’s wellbeing, and no risks are taken regarding the donor’s health.