​Information package for those invited to confirmatory tests

 The Finnish Stem Cell Registry operates for the benefit of patients

The Stem Cell Registry maintained by the Finnish Red Cross Blood Service was established in 1992, and currently, the registry includes more than 50,000 volunteer donors. Finnish members of the Stem Cell Registry have donated their stem cells to more than 600 patients. The patient needing the stem cell transplant can be a child or an adult, in Finland or abroad. A suitable donor can only be found among family members for approximately 30 per cent of patients; the rest need help from unknown volunteers. Blood stem cell transplants are used in the treatment of malignant blood diseases such as leukaemia. The purpose of a stem cell transplant is to replace the cancer patient’s disrupted bone marrow with healthy stem cells. A stem cell transplant is the patient’s last hope when nothing else has worked. This information package provides further information on confirmatory tests and the donation of stem cells.

Invitation to the donor for confirmatory tests

You are a member of the Finnish Stem Cell Registry, and based on preliminary tissue-type tests, you have been found to be a tentatively suitable donor for a patient needing a stem cell transplant. We are now kindly asking you to come in for confirmatory tests. The purpose of the tests is to determine the suitability of your tissue type for the patient in question, and whether your state of health allows the donation of stem cells. For this a blood sample will be drawn which entails normal blood sampling complications (e.g. bruise or pain). In general, a few donor candidates are examined at the same time for one patient, to ensure that the patient receives the transplant they need as quickly as possible. Despite the worldwide registry, sometimes only one tentatively suitable donor can be found.  We will not reveal to the person invited for confirmatory tests how many donor candidates have been examined. If you happen to be the only suitable donor for the patient, we still want you to consider the donation without feeling pressured. If the confirmatory tests reveal that you are the most suitable donor for the patient in question, you will be invited to donate stem cells.

Health questionnaire

We will send you a link to an online health questionnaire to ask you about the status of your health, infections you have suffered previously as well as surgeries and other procedures you have possibly undergone. We also ask questions related to smoking, alcohol use, travel, and medication. The questionnaire also covers personal issues related to sexual behaviour and venereal diseases, among others. Please answer the questions truthfully. All the questions aim to verify that the donation of stem cells is safe for you and the transplant is safe for the seriously ill patient. In addition to the questions, the online health questionnaire aims to provide you with more information regarding the donation of stem cells. Please reserve 15–30 minutes for the answers. Remember to answer all questions. The Finnish Stem Cell Registry receives information on the completion of the questionnaire, and the registry coordinator will contact you to investigate whether you are eligible as a stem cell donor. The questionnaire is completely confidential.

Obstacles to taking part of confirmatory tests and donating stem cells

Temporary obstacles to taking part of confirmatory tests and donating stem cells include pregnancy and breastfeeding. Being significantly overweight, having imbalanced hypertension, having diabetes, and having had cancer are permanent obstacles to donation.

Blood sample for confirmatory tests

If no obstacles to donation are found in the questionnaire, we will set an appointment to collect a blood sample. The sample can be collected at the nearest Blood Service office, health centre, or laboratory of a private clinic. There is no need to refrain from eating due to the sample collection. In addition to tissue-type tests, the blood sample is tested to determine the blood group as well as HIV, hepatitis B virus, hepatitis C virus, cytomegalovirus, and syphilis antibodies.

Contacting

It is particularly important that you inform us if you do not wish to take part  in the examinations this time, if your health prevents you from donation, or if you wish to resign from the registry. You can also notify us by e-mail at kantasolurekisteri@veripalvelu.fi.

Voluntariness and anonymity

Donation of stem cells is voluntary and the donor can resign from the registry. Once the donor has been selected and the decision regarding the donation time has been made, the patient begins to receive extremely powerful treatments in preparation for the stem cell transplant. We would kindly ask you to consider the fact that the cancellation of a stem cell transplant at the last minute may endanger the life of the patient. The identities of both the donor and the patient are kept confidential from one another. All personal details, test results and other information will be handled confidentially, and the people handling the data are bound by a complete obligation to maintain confidentiality. Your personal details, such as name and social security number, are disclosed with your consent only to the person taking the blood sample and, and if you are selected as a donor, to the doctor performing the medical examination and the staff of the stem cell collection centre.

Practical issues

If you are selected as the donor, please discuss the schedule of the stem cell donation with your employer. We aim to take into account your personal wishes regarding the schedule of the donation. We will always let you know the donation method that the physician attending to the patient would primarily wish to be used. Stem cells can be donated in two different ways: from the blood or from the bone marrow. Primarily, it is the patient’s condition that decides the donation method, but in some cases the donor’s own wish can be taken into account.

Travel arrangements and cost compensation

Stem cell donations take place at the Meilahti Hospital in Helsinki. The Blood Service will compensate all direct costs caused by the medical examination and donation of stem cells against receipts. The Stem Cell Registry coordinator will help you with the travel arrangements related to both the medical examination and the donation of stem cells. We will provide you with the necessary instructions, cost compensation forms, a letter for your employer, an insurance form, and taxi vouchers, if necessary, to travel effortlessly from one place to another. We will arrange accommodation for donors from outside Helsinki. You can collect the costs caused by the medical examination directly or together with the costs caused by the donation. The costs will be compensated even if the donation of the stem cells is cancelled. Cancellations can occur as a result of an unpredictable change in the patient’s illness. In such instances, the doctors in charge of the patient must choose a different mode of treatment or a different schedule. You can come to the medical examination in your own car, but we recommend the use of public transportation. You cannot arrive for the donation in your own car. We will provide you with a sick leave certificate for the day of both the medical examination and the donation. Loss of regular income from full-time work is compensated on the basis of a report received from the tax authorities (taxable annual earnings). The daily allowance for an entrepreneur is calculated in relation to the annual earnings which form the basis for the entrepreneur’s pension insurance.

The donor is insured

The Finnish Stem Cell Registry will take care of the insurance cover required for a stem cell donor. The insurance cover includes coverage for life insurance, medical expenses, and disability.

Is a compensation paid for the donation?

The Stem Cell Registry is operated on the principle of passing on a gift from an unnamed person to an unnamed patient. Donation of stem cells is voluntary and donors do not receive compensation. In addition, the legislation in Finland prohibits compensation for the donation.

If you are selected as a donor

The physician attending to the patient waiting for a stem cell transplant selects the stem cell donor. In addition to the tissue type defined during the confirmatory tests, the donor’s age, gender, and blood group affect the selection. The selected donor will be informed of the selection within three months of giving the confirmatory test sample. This schedule is affected by the patient’s medical condition. We will always inform you whether or not you have been selected as a donor. The selected donor will always be called, and everyone else who took part in the confirmatory tests will be sent a letter.

Medical examination of the donor

The selected donor will complete a second, shorter online health questionnaire. In the new questionnaire, additional questions are asked with the intent to find out about the donor’s potential new viral infections and travel history since the confirmatory testing stage. The person selected as the donor will also undergo a thorough medical examination before donating stem cells. The physician making the medical examination will contact you and schedule the medical examination. The medical examination will be performed at the Helsinki University Hospital, Meilahti, two to four weeks before the donation of the stem cells. The examination will be performed by a physician who is specialised in the matter and unconnected to the patient’s care. The medical examination will take several hours. You may also have to wait for some time for laboratory tests and X-ray examinations. It is a good idea to bring something with you to pass the time, for example something to read. The examination confirms that the person selected as the donor does not suffer from illnesses or other factors that would constitute a risk to the donor or cause harm to the patient receiving the stem cell transplant. Among other things, the blood samples are tested for complete blood count, glucose values, creatinine value related to the function of the kidneys, hepatic enzyme, CRP, coagulation factor, blood group, HIV, hepatitis B virus, hepatitis C virus, cytomegalovirus, and syphilis antibodies. In addition to the blood tests, the medical examination includes a chest X-ray, electrocardiogram (ECG), and in the case of women, a pregnancy test. If the donor suitability evaluation so requires, the physician may refer you to further examinations. During the medical examination, the physician will go through issues related to the stem cell donation. These include different methods of donation and the risks related to them, and the progress of the donation process. You will be asked to sign a consent form for the donation of stem cells. Despite the preliminary interview, something may be discovered during the medical examination that prevents the donation of stem cells. You will always be told if the medical examination reveals something abnormal and, if necessary, the physician who performed the examination will refer you to further examinations. The physician will inform you within approximately one week if your health status qualifies you for the donation of stem cells.

Two ways to donate

Stem cells can be donated in two different ways: from the blood or from the bone marrow. It is the patient’s condition that primarily decides the collection method. In some cases, the donor’s wishes can also be taken into consideration. Occasionally, something arises during the medical examination of the donor that may change the planned method of donation.

How should I prepare for the donation?

  • Do not use any flu medications, aspirin, or other acetylsalicylic acid preparations for two weeks prior to the donation, to minimise the risk of bleeding.
  • Bring comfortable, loose-fitting clothing with you.
  • Even though everything has been planned in advance, the schedule may still change without notice. You may have to wait to see the physician or queue for the laboratory. It is a good idea to bring something with you to pass the time, for example something to read.
  • If you wish to purchase something from the cafeteria, please remember to bring cash or your bank card with you.
  • Please do not hesitate to ask us at the Blood Service or the hospital staff anything regarding the donation. You can also call the physician who performed the medical examination.

Collection from the blood stream

When the stem cells are collected from the blood stream, the donor is given a growth factor injection for four to five consecutive days at the Meilahti Triagle Hospital (HUS). Due to the growth factor injections, the stem cell volume increases in the bone marrow and stem cells transfer to the blood stream. The cells are then collected from the blood stream so that they can be transferred to the patient.

The growth factor injections are administered subcutaneously in the arm, abdomen, or thigh. Transfer of the stem cells into the blood stream is monitored by means of blood tests.

When there are enough stem cells in the blood, they are collected from the bend of the elbow with a device developed especially for this purpose. Collection takes appr. 6 hours at a time and is performed over one or two consecutive days. As a pre-treatment before stem cell collection, donors are usually given diazepam, which is intended to prevent the constriction of the veins during the donation.

Stem cells are collected from the blood stream without anaesthesia and the procedure requires no overnight stay at the hospital. In most cases, blood stem cells are collected via catheters placed in veins in the elbow region, but in some cases, it may be necessary to place a central venous catheter into a vein in the neck region.

Recovery and risks

Because the device returns the red blood cells back to the donor’s blood stream, collection of stem cells from blood does not notably lower the haemoglobin of the donor. The growth factor treatment may cause pain when the cell volume of the bone marrow increases. If necessary, this pain can be treated with standard painkillers. After the stem cells have been collected, possible pain ends very quickly. Other possible side effects include flu-like symptoms, headache, nausea, insomnia, sweating, chills, skin symptoms, or fever. Use of the central venous catheter is sometimes connected with extremely rare risk factors, such as pain, risk of infection or bleeding, and air embolism. Leukocyte growth factor has been used to treat patients for some years, and is not known to cause long-term adverse effects. The growth factor is a substance that normally occurs in the body in small doses. The donor will be on sick leave for the duration of the growth factor treatment and the collection of stem cells, for approximately one week. There is usually no need for sick leave after the collection.

Collection from the bone marrow

The donor arrives at the hospital on the day preceding the stem cell donation to have blood tests taken and to meet with a physician. Collection of stem cells from the bone marrow is performed under general anaesthesia. Small increments of bone marrow are aspirated with needles from several locations inside the pelvic bone above the buttocks, and, when necessary, from the sternum. Approximately 300–1,200 ml of bone marrow is collected and the collection takes 1–1.5 hours. Bone marrow is self-regenerating tissue and the bone marrow that is collected is quickly replaced by new, normally functioning bone marrow. The collection does not even temporarily affect the ability of the bone marrow to produce different blood cells. The bone marrow donor can go home the day after the donation. After the donation, the donor will be on sick leave for approximately one week.

Recovery and risks

Donation of stem cells from bone-marrow reduces neither the donor’s resistance to infectious diseases nor the effectiveness of any vaccines that may be administered. The areas from which bone marrow was collected may be tender for 7–10 days after the donation. A few needle marks will be visible on the skin, constituting a slight and usually temporary cosmetic problem. Incised wounds do not arise in the context of a bone marrow donation. Due to the anaesthesia and collection, some donors feel tired for a few days after the donation. Other possible symptoms include sore throat, headache, nausea, dizziness, or bleeding from the puncture locations. In most cases, donors recover fully from the procedure within two weeks. Risks related to general anaesthesia are minimised in advance by a thorough medical examination performed by a physician.

The patient receives the transplant

A trained courier picks up the donated stem cell transplant from the hospital and transports it to the patient. The patient receives the transplant immediately. A stem cell transplant is the patient’s last hope for recovery. The recovery percentage of patients varies depending on the disease and initial situation. If the donor so wishes, they can enquire about the patient’s health with the Stem Cell Registry a year and a half after the donation. The donation can cause strong feelings in the donor and the process can be mentally strenuous. In some cases, the patient dies despite the transplant. In such a case, it is not the fault of a poor stem cell transplant, but the patient’s disease proved too difficult to be treated. In cases like these, one should bear in mind that the donor has given the patient a chance and everything possible was done on behalf of the patient.

Possible re-donation

You will be informed of a possible re-donation in connection with the medical examination. You may be asked to donate blood stem cells a second time. A re-donation refers to a situation in which cells are collected a second time from the donor for the same or a different patient. Approximately 5 to 10% of stem cell donors are asked to donate stem cells a second time. The patient may need blood stem cells again if the original transplant does not function adequately, the transplant begins to be rejected, or the patient’s disease relapses. The most common request concerns the donation of lymphocytes or white blood cells (DLI, Donor Lymphocyte Infusion). Donated white blood cells are needed if the patient’s disease shows signs of relapsing. In most cases, the request is urgent and the lymphocytes are collected from the blood stream. No growth factor injections are administered. The donation of lymphocytes also takes place at the Helsinki University Hospital. A lymphocyte transplant is usually performed a few months after the donation.

Follow-up with the donor

The physician who performed the medical examination will call you approximately a week after the donation of stem cells. They will enquire after your condition and, if necessary, refer you for blood tests and other examinations. In addition, the Stem Cell Registry coordinator will approach you either by post or by telephone, and will ask about your experiences of donating stem cells. If there is something troubling you, or you have questions related to your recovery, please do not hesitate to contact the Stem Cell Registry.

We are happy to answer any questions you may have

You can contact the Stem Cell Registry at any phase of the donation process. We are happy to answer your questions and tell you more about the donation of stem cells.

The Finnish Red Cross Blood Service, Stem Cell Registry
+358 (0)29 300 1515 (Mon–Fri 9 am–3 pm)
kantasolurekisteri@veripalvelu.fi
www.bloodservice.fi/stem-cell-registry @veripalvelu @kantasolurekisteri