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Ques­ti­ons & Answers2020-12-16T18:25:22+01:00

Ques­ti­ons & Answers

Pati­ents, donors and other inte­res­ted par­ties may have a lot of ques­ti­ons about dona­ting stem cells. We have the­re­fo­re com­pi­led a list of the ques­ti­ons most fre­quent­ly asked along with the answers.
If you have not found an ans­wer to your question,
con­ta­ct us by using our con­ta­ct form.

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How can I beco­me a donor?2021 – 02-24T12:24:10+01:00

In princip­le, anyo­ne aged bet­ween 18 and 55 years can regis­ter as a vol­un­ta­ry stem cell donor.
To beco­me a stem cell donor, you can regis­ter eit­her by atten­ding a typ­ing cam­pai­gn or by
reques­ting a regis­tra­ti­on kit from a donor cen­ter of your choice. The kit will be sent out by
post and con­tains all the necessa­ry papers, a con­sent form, and two cot­ton swabs. Each of
the­se is used to take a cheek swab from the lining of the mouth. The sam­ples are then retur­ned
to the donor cen­ter with the signed con­sent form. Your data will be saved and pseud­ony­mi­zed
at the donor cen­ter, then for­war­ded to the ZKRD. Regis­tra­ti­on is then com­ple­te, and you will
be avail­ab­le as a poten­ti­al donor to pati­ents worldwide.

What are blood stem cells?2016 – 01-01T18:05:52+01:00

Blood stem cells are stem cells pro­du­ced in the bone mar­row. They are the star­ting point for
the crea­ti­on of all new cells of the blood and immu­ne sys­tem: They can deve­lop into red and
white blood cells and plate­lets. Once the matu­ra­ti­on pro­cess is com­ple­te they lea­ve the bone
mar­row and enter the bloo­d­stream, whe­re they per­form their job as spe­cia­li­zed cells.
Depen­ding on their func­tion, the blood cells die after a few days or mon­ths and are the­re­fo­re
con­stant­ly repla­ced by new cells.

What is bone mar­row?2021 – 02-24T12:46:51+01:00

Bone mar­row is found insi­de the lar­ge bones, espe­cial­ly in the iliac crest, ster­num
(bre­ast­bo­ne), and ribs. The bone mar­row can rege­ne­ra­te its­elf, con­ti­nuous­ly pro­du­cing blood
cells and immu­ne cells. Sin­ce most of the­se cells have a life span of only a few days to several
weeks, the func­tion of the bone mar­row is cri­ti­cal to survival.

What is a stem cell trans­plan­ta­ti­on and why is it per­for­med?2021 – 02-24T13:28:35+01:00

The­re are dif­fe­rent types of stem cell trans­plan­ta­ti­on. An auto­lo­gous stem cell trans­plan­ta­ti­on
invol­ves the extrac­tion and rein­tro­duc­tion of the patient’s own stem cells. This type of stem
cell trans­plan­ta­ti­on is car­ri­ed out, for instance, if the bone mar­row has been dama­ged by very
strong che­mo­the­ra­py (can­cer drug tre­at­ment) for cer­tain can­cers.
Trans­fer­ring blood stem cells from one per­son to ano­t­her is cal­led allo­gen­eic stem cell
trans­plan­ta­ti­on. This pro­ce­du­re is under­ta­ken if someo­ne has a dis­or­der of the blood-forming
sys­tem or seve­re immun­ode­fi­ci­en­cy. A dis­tinc­tion is also made here bet­ween rela­ted and
unre­la­ted donors. If the pati­ent and donor are rela­ted, the gene­tic mate­ri­al will be more simi­lar
and the pro­ba­bi­li­ty of matching HLA cha­rac­te­ris­tics will be hig­her. This is espe­cial­ly the case
among sib­lings, whe­re the pro­ba­bi­li­ty of fin­ding a gene­tic twin is 25%. If trans­plan­ta­ti­on of
stem cells from a rela­ti­ve is not pos­si­ble, a sui­ta­ble unre­la­ted donor must be found for the
pati­ent. The pro­cess of matching the HLA cha­rac­te­ris­tics of poten­ti­al donors with tho­se of
pati­ents is the core task of the ZKRD.

Which dise­a­ses can be trea­ted with a stem cell trans­plant?2016 – 01-04T00:31:42+01:00

A stem cell trans­plant can offer a poten­ti­al cure for leukemia. Leukemia is also refer­red to as
“blood can­cer.” The­re are many dif­fe­rent types of leukemia, e.g. acu­te lym­pho­cy­tic leukemia
(ALL). The trans­plan­ta­ti­on of stem cells can also be used to tre­at other mali­gnant can­cers
such as lym­pho­ma or myelo­ma, and anemia, immun­ode­fi­ci­en­ci­es or cer­tain her­edita­ry
meta­bo­lic dise­a­ses. In many cases, in fact, it is the best pos­si­ble therapy.

Who can dona­te stem cells?2016 – 01-05T00:29:55+01:00

Any healt­hy indi­vi­du­al aged bet­ween 18 and 55 years can regis­ter as a stem cell donor. If you
are inte­res­ted in beco­m­ing a donor, you can con­ta­ct a donor cen­ter or regis­ter direct­ly during a
typ­ing cam­pai­gn. Regis­tered donors will remain eli­gi­ble until they turn 61.

How are stem cells dona­ted?2016 – 01-06T00:28:15+01:00

The­re are two dif­fe­rent ways to obtain stem cells for trans­plan­ta­ti­on.
In the case of peri­pheral blood stem cell dona­ti­on, the donor is given a growth fac­tor for
several days to encou­ra­ge the stem cells to matu­re fas­ter and pass into the blood. The stem
cells are then fil­te­red out of the blood in a simi­lar way to dia­ly­sis. Sin­ce this has now beco­me
the stan­dard method, we no lon­ger tend to talk about bone mar­row trans­plants but rather
(blood) stem cell trans­plants.
With a bone mar­row dona­ti­on, a long need­le is used to extract some of the bone mar­row from
the pel­vic bone of the donor under gene­ral anesthe­sia. The bone mar­row is quick­ly
rege­ne­ra­ted by the body.

How likely am I to actual­ly dona­te after being typed?2021 – 02-24T13:56:00+01:00

Only about 1% of regis­tered donors actual­ly dona­te stem cells after typ­ing. Fol­­low-up tests
are per­for­med in rough­ly a third of all poten­ti­al donors. The fro­zen blood sam­ple from typ­ing
can usual­ly be used for this pur­po­se. Addi­tio­nal tests may some­ti­mes fol­low, mea­ning that
new blood sam­ples will be needed.

What risks are asso­cia­ted with a stem cell dona­ti­on?2016 – 01-08T00:20:33+01:00

Befo­re the stem cell dona­ti­on, a detail­ed infor­ma­ti­ve talk is always held with the donor and a
tho­rough medi­cal exami­na­ti­on car­ri­ed out. Stem cells may only be dona­ted once all the test
results pro­ve satis­fac­to­ry. The risks dif­fer depen­ding on the method:
In the case of a peri­pheral blood stem cell dona­ti­on, the donor is initi­al­ly trea­ted with a
growth fac­tor for several days to encou­ra­ge the stem cells to pass into the blood. Flu-like
sym­ptoms may deve­lop as a side effect of such tre­at­ment. The­se sym­ptoms can be trea­ted
with pain­kil­lers and disap­pe­ar immedia­te­ly after the tre­at­ment. Sin­ce the intro­duc­tion of this
pro­ce­du­re in 1989, no long-term effects have been repor­ted.
With a bone mar­row dona­ti­on, a long need­le is used to extract bone mar­row from the pel­vic
bone of the donor. Brui­sing can the­re­fo­re deve­lop around the punc­tu­re site and cau­se
dis­com­fort for a few days. As the bone mar­row is collec­ted under gene­ral anesthe­sia, the risk
from the anesthe­sia is the same as with other ope­ra­ti­ons. The bone mar­row its­elf is quick­ly
repro­du­ced by the body.
In rare cases, the donor may expe­ri­ence all­er­gic reac­tions to eit­her of the­se collec­tion
methods.

Can I with­draw my con­sent to the dona­ti­on?2016 – 01-09T00:17:42+01:00

As dona­ti­ons are always vol­un­ta­ry, it is pos­si­ble to with­draw – without having to sta­te a
rea­son – befo­re the pati­ent under­goes pretre­at­ment. If you are eli­gi­ble to dona­te, you will be
invi­ted by your donor cen­ter to attend a detail­ed talk, whe­re you will have the chan­ce to make
your final decisi­on. Howe­ver, if the tre­at­ment pro­cess has alrea­dy star­ted the pati­ent will be
depen­dent on a trans­plant. A life-thre­a­­tening situa­ti­on will other­wi­se develop.

What is tis­sue typ­ing?2016 – 01-10T00:16:12+01:00

Tis­sue typ­ing invol­ves labo­ra­to­ry ana­ly­sis of the blood sam­ple or cheek swab taken from a
new­ly regis­tered donor. Various cha­rac­te­ris­tics are ther­eby deter­mi­ned which as a who­le
reve­al a type of “blood group” for white blood cells. The HLA cha­rac­te­ris­tics A, B, C, DRB1
and DQB1 are espe­cial­ly important. Five HLA cha­rac­te­ris­tics are inheri­ted from each parent.
Sin­ce the­re are several hund­red vari­ants for each of the­se five HLA cha­rac­te­ris­tics, the­re are
tril­li­ons of pos­si­ble com­bi­na­ti­ons. Even more vari­ants can be dif­fe­ren­tia­ted due to modern
fine-typ­ing methods. Sear­ching for a sui­ta­ble donor is the­re­fo­re dif­fi­cult: the pati­ent and
donor can only be regar­ded as “gene­tic twins” if the com­bi­na­ti­ons of vari­ants match.

I was asked to pay for the typ­ing mys­elf. Why?2016 – 01-11T00:13:36+01:00

Hard­ly any public fun­ding is pro­vi­ded for typ­ing new donors. Accord­ing to cur­rent social
secu­ri­ty legis­la­ti­on in Ger­ma­ny, health insuran­ce com­pa­nies are not allo­wed to cover the cost
of initi­al donor typ­ing eit­her. The­se acti­vi­ties are the­re­fo­re fun­ded pre­do­mi­nant­ly by finan­cial
donations.

The health insuran­ce com­pa­nies pay a cer­tain amount toward the search for a donor. How is this money used?2016 – 01-12T00:07:34+01:00

This con­tri­bu­ti­on hel­ps to fund the fol­lowing three are­as:
• The actu­al search, i.e. con­fir­ma­to­ry typ­ing of donors, pro­cu­re­ment and trans­por­ta­ti­on of
blood sam­ples, etc.
• The “ope­ra­ting cost allo­wan­ce” that sup­ports the work of the stem cell donor cen­ters.
• The work of the ZKRD.
For pro­lon­ged and expen­si­ve sear­ches the­re is a recur­ring allo­wan­ce per year. Given that a
sui­ta­ble donor can be found wit­hin a few weeks or mon­ths for most pati­ents, the recur­ring
allo­wan­ce is sel­dom claimed.

I have moved – who should I inform about my new address?2016 – 01-13T23:49:54+01:00

Donors sign a con­sent form to allow the donor cen­ter to for­ward the rele­vant tis­sue data to the
ZKRD. Per­so­nal data such as names and addres­ses remain at the donor cen­ter. Sin­ce the­se
details can only be modi­fied by the donor cen­ter, you need to noti­fy the donor cen­ter of your
new address. After regis­tra­ti­on, you should recei­ve a donor card con­tai­ning the con­ta­ct details
of your donor center.

I have a ques­ti­on about the per­so­nal data recor­ded during the typ­ing pro­cess. Who should I con­ta­ct?2016 – 01-14T14:11:25+01:00

The ZKRD only recei­ves pseud­ony­mi­zed data rela­ting to donors. The­re­fo­re, we have no
access to your per­so­nal data. Plea­se con­ta­ct “your” donor cen­ter in this respect. If you no
lon­ger know which donor cen­ter this is, you can refer to your donor card. Unfor­tu­n­a­te­ly, you
will have to con­ta­ct every sin­gle donor cen­ter if you do not have such a card. The best
approach would be to start with the donor cen­ter nea­rest the faci­li­ty whe­re typ­ing was
performed.

What is the signi­fi­can­ce of stem cells from cord blood?2016 – 01-15T14:32:08+01:00

Stem cells are found not only in the bone mar­row of adults, but also in the cord blood of
new­born babies. After a child is born, stem cells can be taken from the umbi­li­cal cord blood,
pla­ced in sto­rage, and trans­plan­ted into cri­ti­cal­ly ill pati­ents. This type of stem cell dona­ti­on is
sel­dom per­for­med in Ger­ma­ny, howe­ver, sin­ce the ZKRD, as one of the lar­gest donor
regis­tries world­wi­de, has access to a vast num­ber of adult donors.

What are the opti­ons for dona­ting cord blood?2016 – 01-16T14:08:28+01:00

Cord blood can be dona­ted at a public cord blood bank, which makes dona­ted cord blood
acces­si­ble to pati­ents world­wi­de via the ZKRD. The­re is no char­ge for dona­ting to a public
cord blood bank. Ano­t­her opti­on is to pay for sto­rage at a pri­va­te, com­mer­cial cord blood
bank. The cord blood will then be reser­ved exclu­si­ve­ly for your own child.

I would like to dona­te my child’s cord blood. What do I need to do?2016 – 01-17T23:56:02+01:00

First­ly, you should check whe­ther your mater­ni­ty cli­nic has con­nec­tions with a public cord
blood bank. You can then con­ta­ct the cord blood bank to dis­cuss mat­ters fur­ther. If the cli­nic
does not coope­ra­te with a public cord blood bank, it will not be pos­si­ble to dona­te the cord
blood.

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