FAQ - Tobiasregistret


What is required of me, how is a donation carried out and are there any risks?

What is required to join the Tobias Registry?

To join the Tobias Registry, you need to be healthy, between 18-35 years old, live in Sweden, weigh at least 50 kg and have a BMI of no more than 40. Once signed up with the registry, you can be matched with a patient anywhere in the world. You cannot sign up to see if you match with only one specific person.

Sign up here

How does it work?

Sign up by completing a short health form on https://app.tobiasregistret.se. Once the health declaration is completed and approved, we will send you a swabbing kit. You swab the inside of your cheek and send the swab back to us. The swabs are analysed to obtain your unique profile (HLA type), which is stored in a secure database and this is the value which is then used for matching patients with.

By joining the registry, you are searchable by patients worldwide. Should you match with a patient, we will contact you about the next steps.

Why should I join the Tobias Registry?

By being on the Tobias Registry, you can save a life! Every day, someone is affected by a life-threatening disease that can be treated with healthy blood stem cells. So, blood stem cells from another person can save someone’s life, but only if a matching donor is found. What if it is you! You need to be in our registry in order to be found.

Many people think of donation as something you can choose to do when you die, but blood stem cells are something you donate when you are alive. The blood stem cells regenerate within a few weeks after donation. By joining the Tobias Registry, you can have the opportunity to save someone’s life and experience the joy of it.

Are there any risks involved in donating stem cells?

The risks of donating blood stem cells are low. If you become a candidate for donation, we will also do a thorough medical examination to make sure you are healthy.

Why only donors up to 35 years old?

Treatment outcomes for the patient are significantly better with a young donor, therefore the age limit for joining the Tobias Registry is 35 years. We need more people in the 18-35 age group. An additional factor is that each analysis costs quite a bit of money and, as a non-profit limited company owned by Region Stockholm, we work with limited resources. For our work, it is more valuable to focus resources on adding young donors who are more likely to be considered for donation for a longer period. Once on the registry, you are listed and searchable until your 60th birthday. It is always the patient’s doctor who decides who will eventually be considered for donation.

If you are older than 35, it is equally important that you spread the word about the Tobias Registry so that more people around you know about the registry and sign up as donors.

Why the age limit for donors if you are on the registry until you turn 60 years old?

The registry needs more young donors as treatment outcomes for the patient are significantly better with a young donor. Doctors always choose a younger donor over an older one if there are several matches. Once you are on the registry, you remain on it until the day you turn 60, as we already have all your details, in case you are the only match for someone. However, the chances of being selected as a potential donor decrease with age.

Why can you not be overweight or underweight?

For your own health considerations, we cannot accept you as a donor in these cases. Should you need to be anaesthetised, for example, the risks are greater if you are overweight. If you weigh less than 50 kg, it can be difficult to harvest enough blood stem cells from your body.

Can I continue training if I am on the Tobias Registry?

Yes, you can train as usual.

If we have contacted you and you are a candidate for donation, we recommend that you avoid prolonged sedentary periods and activities that may cause trauma to the abdomen (e.g., ball sports/kickboxing) during the period of treatment and for a week after the donation.

Can my fertility be affected by donating stem cells?

There are no known long-term side effects of stem cell donation.

I am on the Tobias Registry. How long does it take before I can donate?

Not everyone on the Tobias Registry will get the chance to donate stem cells, the important thing is to be on the registry. Each member of the registry increases the chances of finding suitable donors for all patients.

There is no way to tell exactly how likely it is that you will be able to donate, but if you are a match for someone, it is a once-in-a-lifetime opportunity and you could potentially save that person’s life. A lot has to align before proceeding to evaluate a potential donor. The chances of being selected as a donor are higher the younger you are, as this has been shown to be most beneficial for patients.

How does a stem cell donation work?

Blood producing stem cells are found inside the bone marrow. There are two ways to collect stem cells from a donor, either via the blood (peripheral stem cell harvest) or directly from the bone marrow (bone marrow harvest). The most common collection method is via the blood.

A less common option is to use blood stem cells from umbilical cord units collected from new-borns.

Read more about the different options below.

Blood stem cell collection via the bloodstream: What is peripheral blood stem cell harvesting?

The stem cells inside the bone marrow can be triggered to be released into the bloodstream with the help of an endogenous hormone and collected (harvested) by centrifugation (apheresis).

Prior to the planned donation, the prospective donor is given the endogenous hormone (in the form of the drug filgrastim or lenograstim/G-CSF) by injection under the skin in the morning and evening for 4-5 days prior to donation. A common discomfort during the treatment days is bone pain. The pain can usually be effectively relieved by taking painkillers containing paracetamol (e.g., Alvedon® or Panodil®). The symptoms usually disappear within a few days after end of treatment. Painkillers containing acetylsalicylic acid should not be taken during treatment.

On the day of the donation, the stem cells are collected by inserting a thin plastic tube into the bend of the arm and the blood is guided transferred into an apheresis machine, which captures the stem cells while other parts of the blood (e.g., red blood cells) are returned to the bloodstream. It usually takes about 4-6 hours. In rare cases, not enough stem cells can be extracted in one day and the donor may need to come in the next day as well. If the donor has a long way to travel, we will arrange an overnight stay, but if you live close to the hospital, you can go home the same day.

During the collection itself, discomfort with tingling in the fingers and around the mouth may occur. These symptoms are harmless and usually resolve by supplementing with calcium.

Occasional and very rare but serious side effects (allergy, blood clots and spleen enlargement) have been described during pre-donation treatment. We therefore recommend avoiding prolonged sedentary periods and activities that may cause trauma to the abdomen (e.g., ball sports/kickboxing) during the period of treatment and for a week after the donation. If you experience abdominal pain, swelling or other symptoms that are not clear to you, you should contact the donation centre immediately.

Normally, you cannot work or attend school on the days of the donation, and sometimes not even on the days immediately before and after the donation, depending, for example, on how far you have to travel.

Are there any risks associated with peripheral blood stem cell harvesting?

The procedure used is common and widely used in Swedish hospitals. The risks of harvesting are low, but there can be complications when puncturing blood vessels – such as bruising.

During the donation, you also receive a substance that prevents the blood from clotting. Some donors feel this as a tingling sensation in their body, but it passes when the procedure is over.

Four days before the procedure, the donor receives injections of a growth factor (G-CSF) that increases the number of stem cells in your blood. During these days, flu-like symptoms such as headaches and muscle aches are common. Thousands of healthy donors have been treated with endogenous hormone (G-CSF) throughout the world with no evidence of harmful effects. Several studies have shown that the hormone therapy does not increase the risk of blood disorders. The stem cells are usually collected in one day, sometimes two days are required. The collection itself takes 4-6 hours per session and requires the insertion of a thin plastic tube in each bend of the arm. In rare cases, a thicker plastic tube needs to be inserted into a larger blood vessel, such as the groin, to ensure adequate blood flow. If necessary, additional information will be provided during your medical examination about possible risks such as bleeding and infection.

In people at increased risk of inflammatory diseases, there is also a small risk that these may flare up due to the G-CSF hormone. If you have such risks, you are advised to donate bone marrow instead. Some physical activities should also be avoided for a few days after the procedure, but there are no known long-term complications from G-CSF treatment.

Collection of blood stem cells from bone marrow: What does bone marrow harvesting entail?

Bone marrow harvesting, i.e., the collection of stem cells directly from the bone marrow, takes place in the surgical department under general anaesthesia. It is the less common way to donate stem cells and it mostly requires hospitalisation, usually for 24 hours. Two doctors use syringes to extract bone marrow from the back of the pelvic bone. The procedure takes about one hour.

After bone marrow harvesting, most people have pelvic pain and may need painkillers. Normally you can go home the same day or the day after the harvest, but you may need to be on sick leave for a few days depending on how you feel. Because of the blood loss associated with the donation, iron tablets are recommended.

Are there any risks associated with bone marrow harvesting?

We make every effort to minimise the risks to the donor. This is one of the reasons why our health checks are so stringent. We simply want to be sure that the procedure can be tolerated, but the risk will never be zero.

Serious complications are very rare, but bone marrow harvesting resembles minor surgery. Rare side effects may occur due to reactions to anaesthesia or infections. However, the current technology is well established and safe. Most people experience localised soreness in the hipbone region or lumbar region for a few days, but fully recover within a week or so. Non-prescription painkillers are usually sufficient. Many people also feel a little more tired than usual for a few days, although the symptoms vary between individuals.

How common is it to collect blood stem cells from the bloodstream (peripheral) vs. bone marrow harvest?

The most common approach is to harvest blood stem cells peripherally, i.e., to collect them from the bend of the arm after a few days of treatment with a medicine that triggers the release of stem cells into the bloodstream. More than 90% of all stem cell harvests are done this way. If the patient is a child, bone marrow is often chosen.

As a donor, do I risk being paralysed? Is bone marrow the same as spinal cord?

No. Bone marrow and spinal cord are not the same. The bone marrow is not collected from or near the spine or the spinal cord, but from the iliac crests above the gluteal muscles. The donor’s spinal cord can therefore not be damaged and there is no risk of paralysis.

I have x disease, can I donate?

 For specific questions related to registration, please contact the Tobias Registry.

I have had cancer myself and now want to help someone else by donating, can I?

No, unfortunately not. As a former cancer patient, you may not be included in the Tobias Registry.

I have a match, what happens now?

The day we contact you because someone needs your help, we will first ask if you are still interested and available to do this. Of course, you can decline if it is not convenient for your life at the moment for various reasons.

If you want to proceed, we will ask you to provide blood samples to make sure you match fully with your patient’s HLA type. Your saliva was tested to a certain degree when you signed up and now, they want to do a broader analysis via blood samples. These blood samples will be taken at your nearest blood or healthcare centre. The blood samples will be sent to the patient’s doctor for analysis. If a donation becomes applicable, we will book you into one of our university hospitals in the country (we always try to find appointments close to where you live) for a comprehensive medical examination. This is to make sure that you are fully healthy and that there are no obstacles to your donation. You will talk to a doctor who will give you thorough information about what it means to donate and what will happen before and on the day of the donation. If you still feel willing and interested in doing this, the planning will continue, but it is completely voluntary, and you can also decline if you do not feel comfortable.

Sometimes there may be a delay in assessing whether a donation will be possible, or the patient’s health condition may change. During the investigation, you are reserved for the patient for three to four months. If three to four months have passed and no donation is planned for the patient in question, we will send you information that you are again searchable in the registry.

Read more about how to make a donation on the About donation page.

If I become eligible to donate to a patient who is abroad, do I travel to that country to donate?

No, you always donate at a university hospital in Sweden. Couriers collect the cells and send them to the country where the patient is located.

Will I know who I am donating to or will the patient know who I am?

No, the Tobias Registry uses codes to prevent the donor and the patient from knowing each other’s identities. The Tobias Registry may send messages to the patient where you do not reveal your identity. You may also receive messages from the patient.

If you have donated via the Tobias Registry, you can contact us 6-12 months after the donation. Only then will we be able to refer the question to the patient’s hospital.

I would like to contact the person I donated to, how do I go about it?

After 6-12 months, you can sometimes get an update on your patient if you wish. You are then welcome to contact us at the Tobias Registry and we will send a request to your patient’s centre. We will then be informed whether the patient is alive or not. However, there are as many rules about this as there are countries and we do not always get replies.

You can always write messages to your patient. These letters must be completely anonymous and will be censored if inappropriate information such as cities, names, etc. is included. The Tobias Registry will pass on your greeting to the patient’s centre for forwarding to your patient. Hopefully, you will get a response from your patient, and there are cases where donors and patients exchange letters in this way. Of course, there are times when the patient wants to contact their donor and we will pass this on to you if applicable.

After a certain amount of time has passed (at least one year), there is sometimes the possibility of letting go of the confidentiality so that you can have direct contact with each other, if both parties want to. Both need to sign a consent form for this, where you also choose which data you wish to disclose. Different countries have very different rules on this too and we always adhere to the restrictions in your patient’s country. Some countries never approve letting go of confidentiality while others may approve it after a certain number of years, usually from 1 – 5 years.

Can I choose who I want to donate to?

No, but donating is always voluntary.

What happens if I change my mind during the process?

Donating stem cells is completely voluntary! It can take several years from the time you sign up to the time we might contact you. By the time we contact you, your life may have changed and for various reasons you may no longer willing/able to do so. In such cases you are free to decline. You have not committed to anything. What we need from you is a quick response so that we can pass on the information to the patient’s doctor.

If you say yes, but during the process you feel hesitant, it is better to drop out at an early stage than later. Before your donation, your patient is also prepared with tough treatments to remove their own immunity. This is to prevent that your cells are rejected during transplantation. If you drop out at a later stage and the patient does not receive stem cells, there is a risk that this person will die.

Can I join the registry with a guardian’s signature if I am under 18?

No, you must be of legal age to join the Tobias Registry.

I joined several years ago but have not heard anything. Am I still registered?

The younger you are, the more likely you are to be selected as a donor, as this has been shown to be in the best interest of the patient. You remain on the registry until your 60th birthday in case a match comes up, unless you contact us and tell us you want to be taken off. If you have not been contacted in the meantime, it is because you have not been matched with anyone yet. But new searches for patients are made in the registry every day, so a match can appear at any time. The younger you are, the more likely you are to be selected as a donor, as this has been shown to be in the best interest of the patient.

Do I have to register in the country where the patient is located to donate?

No, no matter which country your patient match lives in, you can be found through our interconnected systems. You donate in the country you live in and then couriers are used to transport your cells to the patient’s hospital.


How was the Tobias Registry launched?

The Tobias Registry is the Swedish registry for blood stem cell donors. The registry was set up in 1992 by the parents of Tobias Storch, who died at the age of 17 while waiting for a suitable donor. The Tobias Registry matches patients with suitable donors in Sweden or abroad. Please read more on the page “About the Tobias Registry”.

Why is it called the Tobias Registry?

The Tobias Registry was launched in 1992 by the parents of Tobias Storch, who died at the age of 17 after suffering from a severe blood disorder. At the time, there was no registry in Sweden and despite years of searching, no suitable donor was ever found.

The Tobias Registry matches patients with suitable donors in Sweden or abroad and since its inception in 1992, the Registry has helped save many lives. Please read more under “About the Tobias Registry”.

How is the Tobias Registry run?

The registry has a national mission for Sweden’s healthcare system and is run as a non-profit limited company by Region Stockholm. Sweden’s regions provide voluntary financial support for the Tobias Registry’s recruitment of new donors in accordance with a recommendation by Sweden’s municipalities and regions calculated on the basis of the regions’ population.

How many registrants does the Tobias Registry have?

There are currently more than 230,000 registered donors in the Tobias Registry.

How many men and women are in the Tobias Registry?

We are in great need of men as there is a large majority of women in the Tobias Registry. Currently, there are about 75% women and 25% men (2022).

What is the average age of those in the registry?

The majority of those registered in the Tobias Registry are aged 26-35. We constantly need to recruit new, young donors to help sick patients in need of a stem cell donor.

Are you automatically included in the Tobias Registry if you are a blood donor?

No, blood donor centres have their own registries and you are not automatically signed up with the Tobias Registry when you become a blood donor. It is also not possible to store blood stem cells in the same way as blood.


What is a blood stem cell?

Blood stem cells are the cells that produce blood. They are found in the bone marrow, inside the bones. By giving a sick person new blood stem cells, they can produce new, healthy bone marrow and blood.

What is HLA?

The HLA antigen is a marker on the cells and the combination of these determines which HLA type you have. On the surface of most cells are markers called HLA (Human Leukocyte Antigen), tissue type or tissue antigen. The HLA antigen exists in a very large number of variants and can be a barrier during transplantation. The HLA type is something you inherit from your parents and is now available in millions of different combinations. On average, the chance of two siblings having the same HLA is 25%.

What does allogeneic stem cell transplantation entail?

In an allogeneic stem cell transplant, the stem cells are taken from a donor. The donor is either a family member, often a sibling, or an unrelated donor from a registry. Donor selection is based on the patient’s and donor’s HLA types.

What does autologous stem cell transplantation entail?

In an autologous transplant, the stem cells are taken from the patient when the disease is in a dormant stage, known as remission. They are given back to the patient after treatment with cytostatics, sometimes combined with radiotherapy. It does not mean a donation from another person.

What does haplo (haploidentical transplantation) entail?

Nowadays, donors with a better or worse fit (so-called haploidentical transplantation) with the patient can be used and the transplantation method adapted accordingly. Donors for haplo are usually family members.

What kind of diseases can be treated with stem cell transplantation?

Stem cell transplantations are done to treat some forms of cancer and sometimes to treat other rare diseases. Today, leukaemia is the most common disease where blood stem cells are often used as a last resort. There are many other diseases that can be treated in the same way, including severe anaemia, immunodeficiency diseases and metabolic disease. In addition to leukaemia, cancers treated with stem cell transplantation include e.g. lymphoma and myeloma. Currently, a stem cell transplantation can be potentially lifesaving for around 70 different diseases.

How many stem cell transplantations are performed each year in Sweden?

About 600 autologous (where the patient receives their own stem cells) and about 300 allogeneic (where the patient receives stem cells from another person) stem cell transplantations are performed in Sweden every year. About 70% of those in need of a stem cell transplant do not have a suitable donor in their family and need to find a donor who is not related. Of the allogeneic stem cell transplants performed in 2022, 207 were with a donor who was not related.

How many registrants are there worldwide?

There are currently more than 40 million potential donors in all the world’s registries. All 40 million donors are available to patients worldwide. The Tobias Registry is one of more than 100 registries worldwide. Each registry should recruit as many people as possible to contribute to international cooperation and take joint responsibility for saving lives regardless of their country of birth. Read more at WMDA.

How long can stem cells be stored?

Most blood stem cells to be transplanted into a patient are used the next day when they are fresh (need to be given within 72 hours). Blood stem cells can also be frozen at a very low temperature (-140 degrees) and stored for years. If a donation results in more blood stem cells than the patient needs, they are stored frozen in case the same patient needs more cells from their donor. The donor does not have to donate again.

How do you transport stem cells?

Once the blood stem cells are checked, labelled, and packaged, they are transported by a courier in special containers that maintain an optimal temperature directly to the hospital where the patient is located. In exceptional cases, they are frozen before transportation, for example if it is a long journey to the patient’s hospital in another part of the world.

Why not store umbilical cord blood from all babies born in Sweden?

Umbilical cord blood contains blood stem cells that can be used for transplantation in certain types of patients. The Tobias Registry has also been collaborating for many years with the National Cord Blood Biobank at Sahlgrenska University Hospital in Gothenburg. The collaboration includes for example that the biobank registries its umbilical cord units in the Tobias Registry database, making them internationally searchable. But umbilical cord blood is not the best option for everyone.

The National Cord Blood Bank is a public biobank, which means it is accessible to all people worldwide. The Swedish National Cord Blood Bank was created in 2006 and is located at Sahlgrenska University Hospital in Gothenburg. The bank is entirely non-profit and is jointly funded by the counties and the Swedish Childhood Cancer Fund. The National Cord Blood Bank is accredited according to FACT, the Foundation for the Accreditation of Cellular Therapy.

Why are men of interest to the registry?

Men currently account for about one third of the total number of donors in the Tobias Registry. The amount of blood stem cells that 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. Half of the patients are male and thus generally require a larger amount of stem cells than the corresponding female patient. Many young women are periodically unavailable as donors due to pregnancy and breastfeeding. This means that around 10% of the women surveyed in the registry are unable to become donors. That is why we would like to register more young men, as there is a general shortage worldwide.

Why does the Tobias Registry need to work on diversity?

Patients with a non-European background often have difficulties in finding a matching donor that they are not related to. Therefore, it is important for the registry to have a diversity of origins, as HLA types from people of non-European background are in short supply worldwide. Patients of non-European origin currently have a 10-30% chance of finding a matching donor, which justifies targeted recruitment efforts towards this group.

Can you live abroad and register with the Tobias Registry?

No, you must live in Sweden to join the Tobias Registry. But there are similar stem cell registries in many countries around the world, so it is likely that you can register in the country where you live and are nationally registered. Please read more here: Become a donor – WMDA

Can you get paid for donating stem cells?

No, you will not receive any money for donating stem cells but we will of course reimburse you for all financial expenses such as travel, loss of income, etc.

Should a change of address be notified to the Tobias Registry?

No, that is not necessary. If you are selected for a sampling, we search the Swedish Population Registry to find your address, but it is of course a good idea to contact us by email to update your information, e.g., new email, mobile number, etc. And should you move abroad, we would like to know.

Update your data through the Contact form

I want to make a monetary donation to the Tobias Registry; how do I do that?

You can make a monetary donation via Swish: 123 454 19 67 or make a memorial donation by bank transfer.

The money will be used to fund recruitment activities and to promote the registry to attract more donors.

Read more under “Support us”.

Currently, 30% of all patients in need of a stem cell transplant do not have a suitable donor; it is not enough! We will not stop until everyone in need of new healthy stem cells finds their perfect match.

How is my personal data used by the Tobias Registry?

Please read more in our Information on the use of personal data in the “Privacy Policy”.

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