An athlete considering becoming a donor may wonder, with good reason, if he or she will be committing an act of doping, as stem cell donation may be accompanied with administration of growth factor injections that will increase the number of stem cells in the circulation.
Growth factor injections administered to the donor do not raise haemoglobin levels; they will only have a short-term effect on the number of leukocytes in the blood stream, while increasing, in particular, the number of neutrophils and blood stem cells in the circulation. The growth factor has not been included in the list of prohibited substances maintained by the Finnish Antidoping Agency. Representatives of the Stem Cell Registry have also discussed this issue with the Finnish Antidoping Agency, with the conclusion that the use of the growth factor and stem cell donation are permissible practices for an athlete.
No, individuals diagnosed with celiac disease cannot join. As the growth factor treatment cannot be administered to individuals diagnosed with celiac disease, they cannot join, as they would only be able to donate stem cells collected from the bone marrow. Ideally, a member in the Registry should be prepared to donate stem cells both from the blood stream and bone marrow.
You can donate stem cells to your relative without being a member in the Registry if the tissue types for you and the patient match. When a stem cell transplant process is initiated, the suitability of the patient’s siblings is clarified as a first step. With regard to donors that are the patient’s siblings, a quarter on average have a tissue type that is suitable for the patient. If the number of siblings is small, the probability diminishes.
If there are no siblings, or no suitable donor can be found among them, the Stem Cell Registry is searched for the donor. By joining the Registry, you commit yourself to helping such patients for whom no suitable sibling donor can be found.
A member in 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 close individual or friend needs a stem cell transplant, many people volunteer to become a donor. However, the Registry cannot be joined for the purpose of helping a specific patient, since joining may not necessarily help the patient in question. A suitable donor is always found on the basis of the tissue type. As the suitability of a family member of a patent in need of a stem cell transplant is always clarified before the donation, the prospective donor need not join the Registry.
A prolapsed disc and other major problems, traumas and operations prevent you from joining the Registry. Donation under anaesthesia is out of the question if the prospective donor has previous back problems. Donation must not be harmful to the donor’s health, and at the point of joining, the donor must be eligible for all methods of stem cell donation.
Spinal fractures, degeneration of the disc, bulged vertebrae, dysplasia and malformations prevent an individual from joining the Registry.
Scoliosis does not constitute a deferral from joining if no surgical operations have been undertaken and the scoliosis does not prevent the individual concerned from undertaking his or her daily tasks.
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.
If you suffer from hypothyroidism, you cannot join the Stem Cell Registry. However, if you are already a member, hypothyroidism and thyroxine medication prevent donation from the bloodstream, but they do not prevent donation from bone marrow.
Some psychic disorders prevent you from joining. We need to obtain more detailed information on prospective donors who use mind-altering medication. While depression does not prevent you from joining the Stem Cell Registry, depression should be under good therapeutic control and the candidate should not have undergone periods of hospitalisation. Periods of hospitalisation due to depression, a candidate’s having a long medical history related to depression, and the following diagnoses (among others) prevent an individual from joining: bipolar disorder, schizophrenia and serious depression.
Rheumatism is an autoimmune disease and does prevent you from joining.
No, cholesterol-reducing medications do not prevent you from joining the Registry.
No, using snus does not prevent you from joining the Registry.
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.
Costs related to joining the Registry remain uncompensated.
The Finnish Stem Cell Registry (previously the Bone Marrow Donor Registry) was established in 1992. During its existence, a donor has been found in the Finnish Registry for more than 550 patients. While most patients are Finns, Finnish donors also help patients outside Finland every year. Each year, 20 to 40 members in the Registry donate bone marrow or stem cells.
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.
Allergies that cause violent reactions such as dyspnoea or swelling of pharynx constitute a deferral from joining the Registry.
The stem cell donor arrives at the hospital the day before the scheduled donation. The donor will be discharged from hospital the day after the donation, and will receive sick leave lasting approximately one week.
When blood stem cells are collected from the vein in front of the elbow, the donor will first be given a growth factor treatment to cause stem cells to enter the circulation. Sick leave is given for the duration of the growth factor treatment and stem cell collection, normally from Sunday to Friday. Stem cells are collected from the front of the elbow without anaesthesia at the outpatient clinic and the procedure requires no overnight stay in hospital. Normally, there is no need for sick leave after the procedure.
The number of stem cell transplants has increased almost by 10% per year over the past few years. This increase concerns transplants from donors in the Registry; the number of transplants between siblings in not increasing.
Transplants to children are not increasing; as a matter of fact, they are decreasing. The reason is that transplants involve significant long-term side effects which doctors seek to avoid if there are alternative avenues of treatment. As the outcomes of conventional treatments for paediatric leukaemia have improved, fewer children need this extremely intensive treatment.
In other words, the increase in the number of transplants from donors in the Registry concerns adults. The increase is attributable to the fact that transplants are used to treat new diseases (for example, lymphomas) and that, as the treatments are becoming more sophisticated, increasingly older patients, previously beyond treatment, can now be treated.
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).
Transplants will involve new kinds of cellular therapies which will be used in addition to using stem cell transplants. Such therapies will be used in the treatment of infections, relapse of leukaemia, and in treating graft-versus-host disease. Improved medications are also being developed for these problems.
Furthermore, medicine will learn to manipulate the transplant itself, enhancing those properties that destroy leukaemia and removing cells that give rise to graft-versus-host disease. Stem cell transplants will become less arduous and will have fewer long-term effects.
If the number of long-term effects can be reduced, there will be a possibility to increase the number of transplants performed on children.
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.
You can be a member of the Registry until you are 55 years of age. This age limit has been imposed because the probability of illnesses increases with age, resulting in risk to both the donor and patient.
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.