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Adding a contact to your address list:
- Go to https://people.live.com/
- Log in to your email account
- Click on the + ‘new’ icon in the bar at the top of the screen and create a new contact
- •Add the email address: email@example.com in the email field
- Click on ‘save’ at the bottom of the screen
All donors are anonymously recorded with their tissue type (HLA type) in the global stem cell database. Other details that are provided are details that are important when selecting a stem cell donor, such as the donor’s sex, age and blood group.
Transplant centres and doctors worldwide that have specific authorisation, have access to the global stem cell donor database, which contains the above-mentioned details. When you have been identified as being the most suitable donor for a patient, and once we have spoken to you about it, your details will be shared with the organisations involved in the stem cell transplant: the LUMC hospital in Leiden or the Radboudumc hospital in Nijmegen and Sanquin (the blood bank). Your GP will also be kept informed about it.
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.
No, you are not automatically registered as a stem cell donor if you are a blood or organ donor.
In order to determine your tissue type, a cell sample is necessary. Therefore a buccal swab kit containing two swabs is sent to you by mail. It is of the utmost importance that you check if the number of the barcode sticker on the original envelope corresponds with the number on the return envelope.
The swabbing procedure:
- Insert one swab into one of two areas inside your mouth.
- Brush the cotton surface against your inner cheek for 30 seconds.
- Let the swab dry for at least 5 minutes.
- Use the same force you do when brushing your teeth.
- Swab vigorously to collect enough cells.
- Swab the inside of your cheek, not your teeth or gums.
After collection, put the swabs in the return envelope provided. Send us the envelope by regular mail. Postage is not necessary. We will send a confirmation after the kit has been received.
Before you actually register to be a stem cell donor, it’s important that you know what being a stem cell donor implies. You can read more about this on this website.
Once you are sure that you want to be a stem cell donor, the registration process proceeds as follows:
You can register as a stem cell donor by using the online registration form. You 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 once on this link to confirm your registration. (If you click the link twice, you will get a message saying that the link has expired.)
Once you have confirmed, we will check your registration form. If everything looks good, we will approve your registration. If you have indicated any medical matters, your registration will be decided upon by the donor doctor. If your application is not approved, we will inform you of it (by email).
Once you have been approved, we will send you a “registration set”. (You will get an email telling you when it’s in the post.) You use this set to take a sample of your oral mucosa (from the inside of your cheek), using one of the swabs provided. You then return this set to Matchis.
We send your set to the lab and you will get a message that it has been sent. The lab uses your oral mucosa sample to type your stem cells. This takes about 6 weeks, but it could take even longer.
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.
There are two ways to give stem cells. By giving blood (70% of the cases) or bone marrow.
If you donate stem cells by giving bone marrow, you will be given a general anaesthetic so you will feel no pain. After the procedure, you may experience a bruised/ muscle pain feeling that will disappear within a couple days. You may get tired a little quicker than usual for a couple weeks. After this you will be fully recovered. The general anaesthetic is the biggest risk for you as a donor.
If you donate stem cells by giving blood, you will be given a so-called ‘blood growth factor’ for five days before the actual donation. This growth factor can cause some bone ache, muscle ache and a flu-like feeling. This usually subsides after a couple days. The risks for you as a donor are very slight.
No, you only have to provide stem cells when you are matched with a patient. The chance of two strangers finding a match is 1 in 50,000.
If you are a potential match with a patient, we will contact you. It could be that you registered as a donor a long time ago, so we always ask if you are still prepared to donate cells.
It is only then, after you have been given extensive information and a full medical check-up, that you will actually have to donate your stem cells.
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 too old 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.
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. At the moment this is approximately 200 Euros per day.
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.
There are two ways to give stem cells. By giving blood (70% of the cases) or bone marrow.
If you donate stem cells by giving bone marrow, general anaesthesia will be used; therefore you will feel no pain. After the procedure you can experience a bruised/ muscle pain feeling that will disappear within a couple days. You can tire quicker than usual for a couple weeks. After this you will be fully recovered.
If you donate stem cells by giving blood, you will be given endogenous growth factor for five days before the actual donation. This growth factor can cause some bone aches, muscle aches and a flu-like illness. This usually subsides after a couple days.
The patient’s doctor is the person who will eventually decide which donor is the most suitable. The most important aspect that will define whether or not you are a suitable donor is the match between your tissue - or HLA type (stem cell information) - and the patient’s. We received this stem cell information from you upon registration (from the oral mucosa/ cotton swabs).
Apart from this, other aspects are also taken into consideration, such as your blood type, sex and age.
If you are a (potential) match for a patient, we will get in touch with you. So you don’t need to do anything. If you don’t hear anything – then you aren’t a match.
If you are a potential match with a patient, we will call you up to give stem cells. It could be that you registered as a donor a long time ago, so we 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.
No. In any one year, only 1 in a 1000 people from our database will be requested to give stem cells and we have about 96,000 donors on file. The more stem cell donors we have, the bigger the chance of finding a match for a patient.
Some donors are called up after just 3 months, others wait 3 years or 15 years even, and some are never called up.
Can I become a stem cell donor?
Matchis has set limits for weight and BMI. The lower limit of 50 kilos has been set to make sure that there is a good balance between the weight of the average patient and the donor’s weight. When a patient is much heavier than their donor, it’s often impossible to collect enough stem cells without causing any harm to the donor.
The BMI limit has been set because BMI is still the most used measurement for determining if someone is overweight. Being overweight is a risk factor for heart and vascular disorders and therefore it’s also a risk factor for complications with a stem cell donation. Also, research has shown that heavier donors suffer more side-effects from the donation process. So by setting a BMI limit we are protecting the donor. Of course we realise that this is an unfair measure in individual cases or that some people will find it annoying that this is the reason why they can’t be a donor. That is why we do keep a very close and critical eye on our criteria and we try to explain everything as best we can to anyone who questions this.
Many people suffer from allergies. Generally, this does not prevent you from becoming a stem cell donor. As part of the application form, we ask you if you have a severe allergy. The definition of a severe allergy is the use of daily medication for your allergy or if your allergy has (ever) led to a life threatening situation (anaphylactic shock). If you suffer from ‘ordinary’ hay fever, you can answer ‘no’ to this question.
You are still allowed to sign up as a stem cell donor if you have received a blood transfusion in the past.
A cold or the flu does not influence the result of the registration kit. You can still use the registration kit and send it back to us. Get well soon!
Congratulations on your pregnancy! The fact that you are pregnant does not influence the registration kit test. However, you are only allowed to donate stem cells at least six months after giving birth and if you are not or no longer breastfeeding (or if you are willing to stop breastfeeding for a week).
The result of the test can be influenced if the registration kit is used within five minutes after your last sip of coffee or alcohol or your last cigarette.
I am already registered as a stem cell donor
This depends on the characteristics of the tissue type a donor has. Some characteristics or combinations of these occur more in one population than another. Some characteristics occur in both populations. When a donor has these characteristics occurring in both populations, he or she can be a donor for both. However, when a donor has characteristics that are unique to one of the populations, chances are that he or she can only be a donor for someone with the same ethnic background.
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.