Things to know before you join the Stem Cell Registry
The Stem Cell Registry, maintained by the Finnish Red Cross Blood Service, was established in 1992 and currently has over 73,000 volunteer donors. Members of the Stem Cell Registry have donated stem cells to over 900 patients.
A patient in need of a stem cell transplant can be a child or an adult, in Finland or abroad. Only about 30 percent of patients have a suitable donor among close relatives. The rest of the patients need the help of an unknown volunteer.
Stem cell transplantation is used as a treatment for many life-threatening bone marrow disorders, including leukemia, also known as blood cancer. The goal of a stem cell transplant is to replace the patient’s diseased bone marrow function with healthy stem cells. A stem cell transplant is the patient’s chance to recover when other treatments are not expected to provide sufficient help.
A suitable donor for each patient is sought based on the patient’s tissue type (HLA): the goal is for the patient’s and donor’s tissue types to be as similar as possible.
Who can join?
We encourage you to join the Stem Cell Registry if you are 18-35 years old, in good health, and permanently reside in Finland or Estonia. You can remain a member of the registry until you turn 56 years old. Joining the registry requires that you are willing to help any patient in need of a stem cell transplant, anywhere in the world. You cannot join the registry to help only one specific patient.
What happens after joining?
Once you have registered as a member, you will receive a sampling kit, with which you can take a sample from the mucous membrane of your cheek using cotton swabs. You will send the sample to the Stem Cell Registry. The Stem Cell Registry sends the sample coded, i.e., without your personal information, to a tissue typing laboratory in the USA, where the tissue type, blood group, and possible CMV antibodies are examined.
The test results of the swab sample, as well as your year of birth and gender, are transmitted to the international stem cell donor search application, and if necessary, also to the hospital treating the patient and the foreign stem cell registry. The hospital and foreign stem cell registry may be located outside the EU/EEA area.
Some members of the registry are called – sometimes years after joining – for additional confirmatory laboratory tests and, after that, possibly also to become stem cell donors.
Keep your contact information up-to-date
Keep your contact information up-to-date so that we can reach you if it appears that you would be a suitable donor for a patient in need of a stem cell transplant.
Leaving the registry
You can leave the registry at any time with a written or oral notification.
Although many who join the stem cell registry never end up donating blood stem cells due to the diversity of tissue types, every member is a potential lifesaver for the entire time they belong to the registry: every year, several dozen members of the Stem Cell Registry give a critically ill patient a chance to recover.
Donation methods
There are two ways to donate stem cells: they can be collected either directly from the bloodstream after white blood cell growth factor injection treatment, or under anesthesia from the bone marrow inside the large bones of the pelvis. The choice of donation method depends primarily on the patient’s need, but also on the donor’s preference or possible limitations.
Read more about donation methods.
Practical matters related to donation
Read more about practical matters related to donation.
Medical examination
A medical examination is conducted for the selected donor about a month before the donation. It includes several basic blood tests, blood group confirmation, and infection tests. During the medical examination, the donor receives more information about the donation event and can freely ask questions.
Donation is voluntary
Donation is completely voluntary, and you can refuse donating at any stage. However, if a selected donor decides not to donate stem cells after the patient’s preparative regimen for the transplantation has already begun (about 10 days before the planned donation), this can be fatal for the patient.
No compensation is paid for the donation, but related costs and lost earnings are reimbursed.
Contact information
If you have any questions or need more information, you can contact the Stem Cell Registry: kantasolurekisteri@veripalvelu.fi or phone 029 300 1515.