F.A.Q.
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On this page, we answer the most frequently asked questions about stem cell donation. Do you not see your question in this overview? Please contact us.
Topics
Become a stem cell donor
I am gay, bi, lesbian, transgender, can I become a stem cell donor?
Yes, you can. For more information about registering as a donor, please see the page 'Who can become a stem cell donor'
I take medication/have a (medical) condition, can I become a donor?
Taking paracetamol, the pill, or medication for ADD or ADHD is not a problem, you can register as a stem cell donor. Check the 'Who can become a stem cell donor' page for information about which diseases/medication use you can or cannot become a stem cell donor with.
Can I register for one patient?
You cannot register for one specific patient; you register for all patients who are in the same situation. The chance of a match is very small, so in order to find a suitable donor for as many patients as possible, many potential stem cell donors are needed. You will be called as soon as you are a match with a patient.
Why do you have to be under 56 to register?
You can be asked to donate stem cells until you are 55. A stem cell transplant has the greatest chance of success if the donor is aged between 18 and 35 and is healthy. So you can register if you are aged between 18 and 55. If you are in the 18 to 35 age group, you can register free of charge. If you are between the ages of 36 and 55 and want to join the registry, you are welcome to join online with a €35,-payment to cover the cost to join.
I’m over 55 so why can’t I be a stem cell donor anymore?
The risks of stem cell donation are very slight for younger donors. The older the donor is, the riskier it is to donate stem cells. We want to avoid that and that is why we have introduced this age limit. Of course, this doesn’t mean that you really are too old or that you are no longer considered to be healthy. This age limit does not apply in the case of a family donation, for example.
Matchis’ aim is for safe and effective stem cells for its patients with severe disorders. Safe also means that the stem cell donation must be safe for the donor, in particular.
What happens to my cheek mucosa?
Matchis sends the cotton swabs containing your buccal mucosa to a laboratory that isolates DNA from them. The lab does not receive any personal data, only a barcode that can only be traced back to you via Matchis.
The DNA forms the basis for determining your tissue profile (HLA), with which a match with a patient can be made. In order to be able to update the tissue profile with new characteristics based on the development of the technology, the lab stores your DNA for an indefinite period. This allows an even more accurate match to be made over time. Matchis will never give your personal data to the lab without your express written consent.
Registration process
How do I become a stem cell donor
You can register as a stem cell donor by using the online registration form. Just simply fill in your details and work your way through the medical questionnaire to see if you qualify to become a stem cell donor.
- You will receive an email from us with a confirmation link. Click on this link to confirm your registration.
- Once you have confirmed, we will send you a “registration set”. You will get an email telling you when it’s in the post. You can use this set to take a sample of your oral mucosa (from the inside of your cheek), using one of the swabs provided. After this, you can return the set to Matchis via the post.
- You will receive an emial form us hen we have received your set. Your set will then be sent on to our lab to determine your tissue typing. This typing takes about 3- 6 weeks.
- Once the typing is complete, these details are stored (anonymously) in a global database for stem cell donors. You will be sent an email confirming your registration.
The confirmation link doesn't work
This may be because you waited too long to confirm your registration, causing the confirmation link to expire. Please contact us via the contact form.
Sometimes the link does not work if you want to confirm via a mobile device. In that case, try to confirm the link via a computer. If it still does not work, please contact us via the contact form.
I dropped my swabs, what now?
Send us an email via our contact form and we will send you new swabs.
Please note: do not throw away your registration set! We will send you a seperate packet with swabs by post.
The barcode numbers on my registration set don't match
Check the numbers under the barcode. The barcode numbers in the letter, on the small envelope and on the cardboard registration set must match.
Please note: there is also a number code on the swab package, this does not have to match, these are different numbers.
If the barcode numbers in the letter, on the small envelope and the cardboard registration set do not match, request a new registration set via our contact form. Please include the two different codes in the email and indicate that you would like to receive a new set because the codes are different.
Throw away the old set and do not use it, because we will not be able to properly match your cheek swab to the right person!
What happens to my data if I deregister?
If you deregister, Matchis will remove your personal data from its register. This is done by only retaining the year of birth of your date of birth and removing your name, address and place of residence. Data that has been shared with other institutions, such as the laboratory that determined your tissue profile or foreign transplant centers, can never be traced back to you as a person. After all, these institutions only had the unique number (or: pseudonymized data), with which only Matchis could trace your personal data. After deregistering, this is no longer possible.
I registered but have not heard anything about my registration…
You can check the status of your registration in our Donor Portal.
We will send you an email once your set has been sent to the lab. Recently, donors also receive a confirmation by email and post when we have received the HLA typing from the lab. Your registration is then completed and from that moment on you can be called up as a stem cell donor.
If you have never received a message from us by email that your set has arrived and has been sent to the lab, first check the status of your registration in the Donor Portal. Is it stated here that your set has not been received? Send a message via our contact form so that we can check whether your registration has been successful. If not, we will send you a new registration set.
I have been rejected as a donor for medical reasons. If I accept the risks myself, is it allowed?
We do not accept any increased risk for our voluntary donors, as they themselves have no health benefit to gain from the medical procedures they undergo. We are strict in this respect and the decision of a donor physician is leading in this.
A donation with an increased risk is not permitted under any circumstances, not even under the condition that the donor accepts it himself. In addition to donor safety, we must also protect the safety of the patient, who suffers damage from a donation that is cancelled or terminated at a late stage due to donor complications.
In addition, it is our task to ensure that stem cell donation remains known as a safe procedure in order to maintain the system of voluntary donations
I have a medical question, how do I secure it?
You can use our contact form for this. The connection to the website and Matchis environment is secured in several ways. We respond by email using Zorgmail.
I am pregnant. Can I register as a stem cell donor?
You can register as normal if you are pregnant. The fact that you are pregnant does not affect the collection of cheek swabs. However, you can only donate stem cells from six months after pregnancy and provided that you are no longer breastfeeding (or are prepared to interrupt breastfeeding for a week).
Therefore, after you have returned the swabs, send us a message via the contact form with your expected due date. As soon as your registration is complete, we will temporarily deactivate you in our system.
I hav e cold/ the flu. Can I still use my registration set?
A cold or the flu does not influence the result of the registration set. You can still use the swabs and send it back to us. Get well soon!
I have registered but haven't recived a confirmation email
This is possibly due to a mistake with the email address or a technical error. Contact us via our contact form.
I have already been typed for a family member, why do I have to do this again?
If your HLA typing has been determined for a brother, sister or other family member, you are not automatically a stem cell donor at Matchis. You must register with us as a stem cell donor yourself.
We will send you a new registration kit with which you must take a buccal mucosa. The reason that we want to determine your HLA again is because they do a less extensive typing in the hospitals. That is why we would like to send your buccal mucus to the lab again, so that with the extensive typing done there is already a better chance of a match.
After taking my cheek swab I did not return the set immediately. What now?
The faster the set is typed in the lab, the better. To determine the typing as accurately as possible, the most important thing is that you follow the instructions carefully.
In all cases, the swab set may be returned, if typing cannot be done, we will contact you.
Donation process
How are my stem cells collected?
There are two ways to donate stem cells via blood or bone marrow. Read more on the page 'How stem cell donation works'.
Are there any risks and side effects?
Stem cell donation via blood
Side effects of G-CSF
Administering the growth factor G-CSF can cause mild to moderate bone and muscle pain as a side effect, which can be treated well with paracetamol. Sometimes a flu-like feeling occurs with fatigue and possibly a mild fever and headache. Some donors report that they don't sleep as well or experience a slight increase in temperature while using G-CSF. Side effects such as nausea, night sweats and dizziness rarely occur. Occasionally, irritation may also occur at the injection site. In general, the symptoms disappear within one to two days.
One of the side effects of G-CSF is that it can worsen the symptoms of autoimmune diseases, asthma and allergies.
The long-term effects of G-CSF
To date, there is no known adverse effect of G-CSF in the long term. Research has mainly looked at a higher risk of conditions such as cancer. This substance has been used for this application in healthy donors since the early 1990s.
Side effects of stem cell collection from blood
Stem cell donation via blood can take up to 6 hours. A portion of the blood flows through the machine for several hours. Because the blood cools down outside the body, you may feel cold. A blanket can help.
When the stem cells are collected in the machine, platelets can also be included. This can reduce the number of platelets in the body. The number of platelets is therefore checked both before and after the collection. The platelet count does not normally drop so low as to cause problems.
Stem cell donation via bone marrow
Pain?
Donating stem cells from the bone marrow does not hurt, as the donation is always under general anesthesia. With donation via bone marrow, the standard risks of anesthesia are the greatest risk with this form of stem cell donation. After recovering from the anesthesia, you may still feel a bit sleepy. You may also experience a sore throat due to the breathing tube. This usually passes within a few days.
Headache and/or nausea may also occur. These complaints generally disappear the next day.
Collection
The stem cells are extracted from the posterior edge of the pelvis with a thick needle. For the first few days, you may experience a sore, painful feeling at the point where the pelvis was punctured. This is easily treatable with paracetamol. The pain will subside after a few days, but it can sometimes take several weeks for the pain to disappear completely.
Anemia
Because the bone marrow in the pelvis is highly perfused, the removal of bone marrow also draws in a relatively large amount of blood, approximately one liter. This can cause mild anemia. This can cause fatigue. The bone marrow and blood that have been collected are quickly recreated by the body and the anemia will disappear after a few weeks. Iron tablets may be helpful in this regard.
Can I register in advance the way I want to donate stem cells?
You can inform us about your preference when we actually request you to donate stem cells. The patient’s doctor will indicate which method is the best for his or her patient. Stem cell donation is a voluntary process. This means that you as a donor decide which method will be used. If this choice does not correspond with the doctor’s choice, he/she can decide to choose another donor.
How often will I have to donate stem cells?
The chance of a match is very small. Which is why we need many potential donors inour database. Some donors are called after 3 months, others only after 3 years, 15 years or never.
When will you contact me to donate my stem cells?
If you are a potential match with a patient, we will contact you. Ypu could be registered as a donor for a long before, and even if, this happens. We will always ask if you are still prepared to donate cells.
Only then – after you have received extensive information and have had a full medical examination – will the donation of stem cells take place.
How is a match made with a patient?
Which donor is the most suitable is ultimately determined by the patient's treating physician. The most important factor for this determination is your tissue or HLA typing. This must match that of the patient. If you are a (potential) match for a patient, we will contact you. You do not have to do anything yourself. If you do not hear anything, you are not a match.
As soon as someone has registered as a donor, his or her HLA typing (tissue typing) is determined with the swabs. If a patient needs stem cells with that tissue typing, the donor is contacted.
A stem cell transplant only has a chance of success if the tissue typing of the donor and patient are as similar as possible. The donor's stem cells are the source of the white blood cells of the immune system. If they regard the patient's body as foreign, serious and even fatal complications arise.
It is therefore important that the tissue typing of a donor matches a patient as closely as possible. Finding a donor with a suitable tissue typing is called 'matching'.
The most important factors for making a match are:
- HLA (Human Leukocyte Antigen) this is the result of your tissue typing, is the first factor, this must match or be the same as much as possible, preferably we have a 10 out of 10 match.
- Age is also an important factor, preference is given to a young donor because the quality of the stem cells is higher and the transplantation in the patient is more often successful. In addition, the chance of risks also increases for the donor as the donor gets older.
- Gender is also an important factor. There is a preference for male donors, because they have more stem cells. Women have also often already had a pregnancy, which means that the stem cells are less suitable, which increases the chance of rejection symptoms in the patient.
- CMV also known as the cytomegalovirus. We want to know whether the donor has had an infection or not, and is therefore positive or negative for the virus. This is a virus that many people have had without noticing. A patient who has had this and is transplanted with cells from a donor who does not have this, can experience a lot of problems from this, the same but to a lesser extent also applies if a patient has not had the infection and the donor has.
- Urgency of the patient is also an important factor in the choices we make.
- We also look at factors such as weight, risk behavior, travel history in the past months and availability
Will my expenses be reimbursed when I donate stem cells?
All expenses will be reimbursed. Because, by law, stem cell donation has to be voluntary, with no monetary gain, Matchis has to be able to account for all payments made. That is why Matchis always has to ask for proof of expenses and all claims have to be for reasonable amounts. If you are unsure about anything, you can always discuss this with the donor coordinator. The invoices for all hospital expenses will be paid directly by Matchis. So it will not affect the personal risk or “no claims bonus” of your health insurance.
Leave of absence from work because of stem cell donation is regulated by the Dutch law known as: ‘Wet Uitbreiding Loondoorbetalingsverplichting bij Ziekte (WULBZ)’ (the Law for the Extended Obligatory Payment of Salary due to Illness). This regulation applies to being unfit for work because of (stem cell) donation and covers all the days needed for donating the stem cells, including the day before the donation and the recovery period. During your leave, you will be paid in accordance with your CAO (collective labour agreement).
Your employer will report your absence to the UWV (Employee Insurance Agency) for the days when you are donating stem cells and the recovery period. Your employer can claim your wage for the days that you are absent (your sick pay) from this agency.
For people not in employment, the UWV’s standard daily allowance applies.
How long will I have to stay in hospital when donating stem cells?
You have to stay in the hospital for one day when you are donating stem cells by giving blood or bone marrow. This will either take place in the LUMC in Leiden or the Radboud UMC in Nijmegen, depending on where you live.
For some of the stages in the process (information meeting, medical examination and the primary, so-called ‘blood growth factor’ injection, in the case of stem cell donation through blood) you will have to visit the hospital or one of Matchis’ offices in Leiden or Nijmegen a couple times.
How many times am I alowed to donate stem cells? Can I still donate stem cells to a family member?
Our policy is to ask a donor to donate stem cells a maximum of three times. Medically, you can give stem cells more often; in that perspective, stem cell donation is more similar to blood donation than to organ donation. Your body quickly produces new stem cells.
If you are a match with a second patient, we allow an interval period of at least one year between donations. If the donation is for the same patient, you first have to be fully recovered and there is a minimum interval period of 6 weeks.
If you have donated stem cells three times, you are still considered to be available for family members looking for a stem cell donor. There is no maximum amount of stem cell donations for family; it doesn’t matter how many times you have donated to unrelated patients.
General
I want to see/change my details
You can view and change your details and the status of your registration in our Donor Portal.
You can request your HLA typing via this form. Send this completed form, together with a copy of a valid ID (cover the BSN number, or make a copy with the app KopieID) to Donor.registratie@matchis.nl. We will send the docuemnt with your HLA-typing back securely via Zorgmail.
How can I deregister as a stem cell donor?
You can deregister as a stem cell donor via our contact form. We would appreciate if you could mention the reason for deregistration. You will receive an email with confirmation.
I am moving abroad, do I have to deregister?
If you are moving abroad for a long period or permanently, please let us know via the contact form. We will deregister you as a donor and you can register in the country where you are going to live.
I have been a stem cell donor (for years) but no longer meet the criteria, now what?
If you are not healthy or have a condition that prevents you from donating, please let us know. We will then deregister you or temporarily suspend you from the database.
Send a message via our contact form. Please also state the (medical) reason in the message.
How can I stop my monthly financial donation?
You can stop your monthly financial donation to Matchis by leaving a message on our contact form. Or send an email to info@fondsstamceldonatie.nl