Contact us
If you need to get in touch with us, please do not hesitate to reach out.
You can also find frequently asked questions and answers here.
Contact details
Are you a healthcare provider with questions about testing a potential donor? Read more here or contact us.
Are you in the process of making a donation? Please contact your coordinator first.
Contact details
+46 (0) 8746 80 20
info@tobiasregistret.se
Phone hours
Mon-Thurs 08:00–16:45
Fridays 08:00–15:00
Press contact
Sara Tidholm
sara.tidholm@regionstockholm.se
+46 (0) 702 92 86 80
Logo and press images for download
Frequently Asked Questions
It's simple to join the Tobias Registry and only takes a few minutes. Sign up by filling out a short digital health form. Once you have answered the questions and filled in your contact details, we will send you a swab kit. You swab the inside of your cheek and send the swab back to us. The swab is analyzed to determine your unique profile (HLA type) which is stored in a secure database with us and is the value used later to match patients.
By being in the registry, you are searchable by patients all over the world. If you match with a patient, we will contact you about the next steps.
The day we contact you because someone needs your help, we will first ask if you are still interested and available to donate. Of course, you can say no.
If you wish to proceed, we will ask you to answer a health questionnaire and provide blood samples. These blood samples should be given at the nearest blood or healthcare center. The blood samples are sent to the patient's treating physician and thereafter it may take a few months before the hospital makes a decision. About 20% of all those who take this first step become candidates for donation.
If a donation becomes relevant, we will schedule you for a comprehensive health examination at one of our university hospitals in the country. Depending on where you live, this may include travel. The Tobias Registry assists with booking and will naturally cover all expenses.
The health examination is conducted to ensure that you are completely healthy and that there are no obstacles for you to donate. In connection with this, you will have the opportunity to speak with a doctor who will provide you with detailed information about what it means to donate and what will happen before and on the day of the donation itself. If you still feel willing and interested to donate, the planning will proceed, but it is entirely voluntary and you can also decline at this point if it doesn't feel right.
Have you been waiting long for a response from us?
Sometimes responses can be delayed if a donation is becoming relevant, or the patient's health condition may change. While you are being evaluated, you are reserved for the patient for three to four months. If three to four months have passed and no donation has been planned for the current patient, we will send information that you are searchable in the registry again.
Blood-forming stem cells are found inside the bone marrow. There are two ways to collect stem cells from a donor, either through the blood or directly from the bone marrow. The most common method is to collect through the blood.
Read more at: If you are matched
A less common alternative is to use blood stem cells from umbilical cord units collected from newborns.
You can sign up for the Tobias Registry if you are between 16 and 35 years old and once you have joined, you remain in the registry until you turn 60 unless you contact us yourself and indicate that you want to leave.
The reason for the age limit is that young donors give patients the best chance of a good outcome. Therefore, young donors are selected more frequently.
It is always the patient's doctor who determines who is eligible for donation, so you can still be considered as a donor after 35, although the chances of finding a match decrease with age.
Are you over 35?
Then you can still help by spreading information about the Tobias Registry so that more young people get the chance to join.
Right now, the registry consists of about 70% women and 30% men. This reduces the chances for some patients to find a good match. Therefore, it is especially important that more men sign up
Boys' stem cells may suit more patients, as they rarely have antibodies that women can develop during pregnancy. The amount of blood stem cells a person can donate, and that a patient needs, depends on body volume. The donor needs to be as big or bigger than the recipient, and men tend to have a higher body weight than women.
The more men who join, the more lives can be saved.