Why is it important to join the Tobias Registry? And what happens if I am approached to donate? Here is more information on how it works if you are considering a stem cell donation.
It is important that as many people as possible are included in the registry so that more patients can find a perfect match.
Every day someone in Sweden, and many more around the world, is affected by a disease that can be cured with healthy blood stem cells, but about 30% never find a match, so the registry needs to expand.
What are the chances that if I join the registry I will get a match?
There is no way to tell exactly how likely it is that you will be able to donate, but if you are someone’s match, it is a unique 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. Very few are over 45 years old when they donate.
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. When you signed up, your saliva was tested to a certain degree, 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 you are eligible for a donation, 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. The examination is done 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 decline at this point 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 3 months. If three 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.
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.
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.
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).
Four days before the procedure, you take 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. The pain can usually be effectively relieved by taking painkillers containing paracetamol (e.g., Alvedon® or Panodil®) and the symptoms usually disappear within a few days after the end of treatment. You should not take painkillers containing acetylsalicylic acid during treatment. Please contact the donation centre if anything is unclear about your medication or if you become ill before or during the donation process.
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.
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.
In people at increased risk of inflammatory diseases, there is also a small risk that these may flare up. If you have such risks, you are advised to donate bone marrow instead. For a few days after the procedure, you should also avoid certain physical activities. However, there are no known long-term complications from treatment with G-CSF.
On the day of the donation, the stem cells are collected by inserting a thin plastic tube into the bends of each 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 you have 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.
You have now potentially saved someone’s life, what a precious gift! Tell everyone you know about it.
Your cells have been transported to your patient and all we can do now is hope it goes well. It takes time to recover from a transplant.
Feel free to share your experience with us by sending pictures/text/videos and we will share it on our channels. It is highly appreciated by followers and contributes to more people signing up with the Tobias Registry. If you want, you can also share on your social media channels, but be careful to tell us which country the cells are going to (if you know) and preferably do not post any dates.
You will now be removed from the registry. The main reason for this is to keep you reserved for your patient in case they need a new dose of cells. Of course, you have not committed yourself to this, but as you are a full match, we would like to start by contacting you to see if you are available if it becomes relevant.
If you want to know how your patient is doing, it is generally acceptable to send an inquiry to the hospital after 6-12 months. Most countries agree to disclose this information, but unfortunately not all. If you are interested in this, you must actively contact us 6-12 months after your donation and we will send a request to your patient’s hospital.
