First, you must register as a blood donor in one of the blood banks in Norway. Registration as a bone marrow donor also takes place in the blood bank.
IF YOU DONATE BONE MARROW – YOU DONATE LIFE
This is an English translation of the recruitment and consent brochure published in Norwegian by The Norwegian Bone Marrow Donor Registry (NBMDR), Department of Immunology, Oslo University Hospital.
ARE YOU WILLING TO DONATE STEM CELLS?
- Imagine yourself or one of your loved ones being struck by leukaemia or another serious blood disease. Without a stem cell transplantation, the chances of surviving more than a few years is small for some patients. A transplantation with stem cells harvested from bone marrow or blood may save a life.
- Imagine being able to donate healthy stem cells to a patient and thus saving the life of a patient.
- The more people are willing to donate stem cells the more patients can find a suitable donor and receive a transplant.
- As a volunteer in The Bone Marrow Donor Registry you may be asked to donate stem cells to a patient.
ARE YOU WILLING TO JOIN THE NORWEGIAN BONE MARROW DONOR REGISTRY?
Only blood donors can join the registry. Please contact your own blood bank. As a volunteer donor you will first be tissue typed. This is done by a regular blood test.
After you have been tissue typed, your data will be entered into the database of The Norwegian Bone Marrow Donor Registry.
When a patient needs a transplant, we will search for a donor with the same tissue type as the patient.
Stem cells are harvested from the donor at the time of the transplant.
WHO MAY DONATE STEM CELLS?
If a sister or a brother has the same tissue type as the patient, she or he will be the best donor. If the patient does not have a sibling or other close relatives with the same tissue type, one will need to search for an unrelated donor with the same tissue type as the patient.
WHAT IS BONE MARROW AND WHAT ARE STEM CELLS?
Bone marrow occupies the interior cavities of bones. The marrow contains numerous bone marrow cells including immature stem cells. Stem cells are normal constituents of the bone marrow. Stem cells are progenitors for red blood cells, white blood cells and blood platelets. When stem cells divide, they mature, and the mature red and white blood cells and the blood platelets enter into the blood circulation.
WHAT IS A BONE MARROW TRANSPLANTATION?
When a patient has a bone marrow transplantation done, that means that the patient receives healthy stem cells from a donor. Therefore a bone marrow transplantation is also known as a stem cell transplantation, and a bone marrow donor is also known as a stem cell donor.
About a week prior to a stem cell transplantation, the patient receives pre-treatment to eradicate the patient's own bone marrow cells. Strong chemotherapy or irradiation is used for this purpose. Afterwards, the patient receives healthy stem cells from the donor through an intravenous infusion, just like a regular blood transfusion. Prior to this, the donor's stem cells have been collected in a transfusion bag after having been harvested from either bone marrow or blood. The transfused stem cells find their way to the patient's bone marrow and "settle down" there.
The purpose of the transplant is that the new stem cells will establish a new production of blood cells and blood platelets in the patient.
WHAT KIND OF PATIENTS ARE STEM CELL TRANSPLANTED?
Most of the patients suffer from leukaemia (blood cancer) or other serious blood diseases, but patients with certain rare inborn metabolic disorders, inborn immunodeficiencies or extensive irradiation damage may also be treated. Stem cell transplantation may be a life saving treatment in these conditions.
CAN I WITHDRAW AT ANY TIME?
You may withdraw at any time before the pre-treatment of the patient starts, and you do not need to give a reason.
HOW DO I DONATE STEM CELLS FROM THE BONE MARROW?
How is bone marrow harvested?
Bone marrow harvesting takes place in a hospital with good experience in bone marrow harvesting. First, the bone marrow donor receives full anaesthesia. A needle is inserted into the backside of the hipbone (pelvis) on both sides. The bone marrow, which looks like blood, is aspirated through the needle to be collected in a transfusion bag. Only a small fraction of the donor's bone marrow is aspirated, and this fraction is renewed within a few weeks. The harvesting takes about one hour to complete. The donor can go home the next day.
Is there a pre-treatment of a bone marrow donor?
No, there is no special pre-treatment. The donor only needs to fast from midnight before the day of the harvesting.
Does it hurt to donate bone marrow?
Everyone experiences some pain and tenderness in on the upper backside of the hip region some days after the harvesting. The donor should be careful when lifting heavy items or exercising for a week. There will be no or only small scars after the procedure.
Is it dangerous to donate bone marrow?
If you are healthy there are only minor risks related to bone marrow harvesting and complications are rare. The donor will always go through a thorough health examination prior to harvesting and will attend an extensive information session.
HOW DO I DONATE STEM CELLS FROM THE BLOOD?
How can stem cells be in the blood circulation?
Normally, stem cells are found in the bone marrow, but stem cells can under certain conditions be found in the blood circulation after a special treatment. The donor is given injections of a so-called stem cell growth factor every morning for 5 days, and this causes some of the stem cells to enter the blood circulation. Currently, a stem cell growth factor called G-CSF is used. G-CSF is a component which normally can be found in the body and which stimulates stem cells. When an adequate number of stem cells are detected in the blood circulation after treatment with G-CSF, stem cells can be collected. Stem cells circulating in the blood return to the bone marrow shortly after termination of G-CSF treatment.
How are stem cells collected from the blood?
Stem cells from the blood circulation are collected by means of an apheresis machine. The procedure takes place in a hospital with good experience in the usage of this machine. Blood is collected in a way similar to a blood donation. The collected blood is then centrifuged in the apheresis machine so the stem cells can be extracted. The rest of the blood is returned to the donor. The process lasts a few hours, and it might need to be repeated the next day to collect enough stem cells. Only a small fraction of the stem cells is collected, and stem cells renew within a short time.
Is it painful or dangerous to donate stem cells?
There is not particularly more discomfort than a normal blood donation, and the risk is very small for a dangerous complication. Since the procedure lasts a few hours, you might get tired. Blood circulation and blood values are followed carefully during the procedure, and the apheresis will be terminated if the donor is not feeling well.
Is there any discomfort or danger related to G-CSF treatment?
Daily injections of G-CSF is a low risk procedure. Almost all donors experience pain in the bones as a side effect. Many experience fatigue, and some might have a slight fever and/or a headache. The discomfort can be treated with paracetamol or stronger painkillers. The majority can attend work during G-CSF treatment, but some are away from work a few days. Everyone goes through an extensive health examination and information session prior to the treatment.
HOW DO I BECOME A STEM CELL DONOR?
If you are between 18 and 40 years of age, you can contact your blood bank and ask to become a volunteer in The Norwegian Bone Marrow Donor Registry. You may then be a volunteer donor in The Norwegian Bone Marrow Donor Registry until the age of 55 years. To be able to tissue type you, we need a blood sample, for instance drawn in relation to a regular blood donation.
WHAT IS A TISSUE TYPE?
A tissue type is determined by molecules on the surface of body cells. These molecules are important for the immune system. It is established that there has to be blood group compatibility when a blood transfusion is done. When performing a transplantation with stem cells, tissue type compatibility is required.
WHY DO WE NEED MANY STEM CELL DONORS?
There are many millions of tissue type combinations. It is therefore difficult to find a donor with the same tissue type as a patient. More volunteer stem cells donors make it possible to find a donor to more patients. The more volunteers that join stem cell donor registries the higher the chances of finding a suitable tissue type match for a patient. The likelihood that you will be selected to donate stem cells is approximately 1-2 in 1,000 per year.
WHAT IS CYTOMEGALOVIRUS (CMV)?
CMV is a very common virus which normally only gives mild symptoms in healthy people. For a patient who is to receive a stem cell transplantation, differences in the CMV status (for the patient and the donor) can potentially lead to serious infections. It therefore is important to know whether a potential stem cell donor has been through a CMV infection or not.
HOW AM I INFORMED THAT I MAY DONATE STEM CELLS?
If your tissue type seems compatible with a patient, we will ask for a new blood sample for a more detailed tissue typing. If your tissue type turns out to be sufficiently similar to the patient's tissue type that you can be selected for donation, you will be asked to attend a donor information session and go through a health examination. At this stage we will, among other issues, discuss whether you may donate stem cells from the bone marrow or from the blood.
Information about your name, social security number (unique personal number), gender, blood bank, blood group, certain standard viral and bacterial test results, and your tissue type will be filed in the electronic data base of The Norwegian Bone Marrow Donor Registry at Oslo University Hospital.
The Norwegian Bone Marrow Donor Registry has a concession from The Norwegian Data Protection Authority (Datatilsynet). Your rights are described and protected by the Personal Health Data Filing System Act (Helseregisterloven) and the Personal Data Act (Personopplysningsloven).
Medical and practical information with relevance for a possible donation, and which is obtained during a work up of you as a potential donor, may also be filed. The information is treated confidentially by the personnel with a duty of confidentiality.
A unique identification number, assigned to you by The Norwegian Bone Marrow Donor Registry, substitutes your name and social security number in all our correspondence with other registries and transplantation hospitals.
If you wish we may delete information about you that we have on our files. The exception is if you have donated stem cells to a patient. In that case, your data will be stored in a historical file for 30 years according to regulations concerning requirements for quality and security standards for human cells and tissue for usage in humans.
To allow as many patients as possible to be stem cell transplanted, we need many thousand donors in Norway. We collaborate extensively with stem cell donor registries all over the world and we have therefore access to millions of donors. We are at the same time providing donors for patients in other countries.
The Norwegian Bone Marrow Donor Registry regularly transmits donor-related data to an international database in the Netherlands, and to other registries so that transplantation hospitals may search for donors for their patients. For these purposes, only the assigned unique identification numbers are used, and NOT the name or social security number (unique personal number) of the donors.
The Norwegian Bone Marrow Donor Registry was established in 1990. Bone marrow donation was the only alternative at that time, hence the name. The possibility to donate stem cells collected from blood has later become an alternative for donation.
The Norwegian Bone Marrow Donor Registry is the result of collaboration between all blood banks in Norway and Iceland, the Department of Immunology and other entities at Oslo University Hospital.
The Norwegian Bone Marrow Donor Registry was earlier financed by The Norwegian Cancer Society (Kreftforeningen). From the 1st of January 2014, the The Norwegian Bone Marrow Donor Registry is wholly financed by Oslo University Hospital.
We thank you for reading through this information, and hope that you will join The Norwegian Bone Marrow Donor Registry through your local blood bank.
This information was updated in May 2022 and is based on the Norwegian recruitment pamphlet published in May 2021.