Here are the answers to frequently asked questions.
| 1 | Who can become a donor? |
| 2 | Who may not be a donor? |
| 3 | What if I am pregnant or become pregnant? |
| 46 | How is the DKMS financed? |
| 47 | How do employers react? |
| 48 | How is my safety as donor insured? |
| 49 | Who can organize registration drives? |
| 50 | What are the necessary preconditions? |
| 51 | What support does the DKMS provide? |
| 52 | Can I manage this alone? |
In principle, anyone can be a live donor who is aged between 18 and 55
years and who is in a good physical condition. For your protection and
for the good of the patients, there are some exceptions. There will be
more about this in the next section.
For new registrations, the DKMS has to comply precisely with the German Medical Association guidelines.
These state that the following persons may not be registered:
- Persons younger than 18 years or older than 55 years
- Persons who weigh less than 120,23 lb. or who are greatly overweight
If your body mass index (BMI) is more than 40, registration is
unfortunately not possible. You can calculate your BMI with our body mass index calculator.
- Persons with specific serious diseases are excluded. More details can be found here.
- Persons after transplantation of a donor organ
- Persons suffering from addiction
- Persons belonging to one of the risk groups laid down by the German Medical Association
First of all: Congratulations! As a registered donor, we would
like to request you to inform us of your pregnancy and the expected
date of birth. From this point in time and usually up to 6 months after
the birth (interval for breast feeding and recovery), you will be
suspended as a potential donor of stem cells. After the end of this
period, you will be then open to enquiries, unless we hear anything to
the contrary from you.
Please note: If you have not already registered as donor, you don't
have to wait till after the registration! When you are registering at
the DKMS, you just have to tell us the date of the birth and we will
take care of the other steps, as described above.
Our experience is, that not more than 5% of potential stem cell donors
actually donate stem cells within the following ten years. For young
and fully typed donors, the probability of donating stem cells within
the first year of typing is about 1%. At the moment, four to five DKMS
donors donate stem cells daily. The chance to live has been given more
than 22.213 times.
Data protection and security are of the greatest importance for DKMS
and for all its employees. We make every effort to ensure that the
personal data of our donors is protected. We have our own internal data
protection officer in the DKMS, who take care that the German laws on
data protection are complied with.
The DKMS collects, processes and uses your personal data in accordance
with your declaration of consent, in so far as this is legally
permissible and necessary to find suitable bone marrow donors or stem
cell donors.
The personal data are stored exclusively at the DKMS. Only the data
relevant to the search, such as HLA typing , age and gender, together
with the allocated donor number, will be transmitted to national or
international search centers like the ZKRD (German Central Bone Marrow
Donor Register).
A duplicate registration would be unnecessary and wrong, as all data
are collected in the ZKRD (German Central Bone Marrow Donor Register )
in Ulm. A second registration would lead to unnecessary costs and to
confusion.
Depending on the urgency and the patient's general condition, there
will be an interval of about one to three months between the DR typing
and the stem cell donation. If the HLA characteristics are found
and match, further tests may be performed and more blood may be
taken for CT (Confirmatory Typing). It is then decided whether the
donor really suits the patient.
If the patient and the donor match in the first four of at least six
HLA characteristics , additional tissue typing is performed on these
donors. This is known as HLA-DR typing. The probability that the stem
cell donor can still be used for a specific patient after this typing
is about 5%.
There is a second possible reason that a second tissue typing may be
performed. To accelerate the search for suitable stem cell donors for a
patient, HLA-DR typing may occur as part of a quality project initiated
by the DKMS. Using a special program, donors are selected who, on the
basis of their HLA characteristics , have a statistically increased
probability of being possible stem cell donors. These donors are
regarded as being prospective donors for the future and are not HLA-DR
typed for a specific patient.
There are usually still one or two investigation steps between the
HLA-DR typing and the actual stem cell donation. In any case, so-called
confirmatory testing is performed before stem cell donation. For this
purpose, all tissue characteristics of the donor are re-examined at
the transplantation center at high resolution. In addition, the donor's
blood is tested for specific pathogens, such as HIV or hepatitis
viruses, to exclude possible infectious diseases. The probability that
stem cell donation takes place after this investigation is about 20%.
In some cases, only high resolution DNA typing is performed after the
second investigation step (DR typing). Specific tissue
characteristics are then additionally classified. If the high
resolution tissue characteristics from donor and the patient match, the probability, that this will be a possible stem cell donor for the
specific patient on the basis of subsequent confirmatory testing,
increases to about 80%.
For reasons of costs, only some of the HLA characteristics are
determined during registration - the HLA-A and HLA-B
characteristics. The first four of at least six tissue
characteristics are needed for the first comparison in the search
center between the HLA findings for the patient and donor, to recognise
whether there is a possible match.
HLA characteristics are tissue typings. These are characteristics of the
so-called HLA system, also known as the tissue compatibility system.
HLA is the abbreviation for Human Leukocyte Antigen, as the tissue
characteristics were first identified on the surfaces of white blood
cells (leukocytes). Each human has specific tissue characteristics on
his body cells. These are typical of the individual and are used by the
immune system to distinguish between the individual's tissue and
foreign tissue. This is why there is a defensive reaction to pathogens
(foreign proteins), which can lead to a rejection reaction against
transplantations (see GvHD, Graft versus Host Disease). This is why it
is important that the HLA tissue characteristics should match between
donor and patient to almost 100%, so that the patient will not develop
the much feared rejection reaction.
The genetic information of the total HLA system is localised on the
short arm of chromosome 6 and causes synthesis of specific proteins on
the cell surface, the so-called HLA characteristics. These are named
after the underlying gene loci. The most important HLA characteristics
are the HLA-A, HLA-B and HLA-DR characteristics. Once these typings
have been determined, an initial evaluation is usually possible as to
whether this is a possible stem cell donor for a specific patient.
There are additional HLA typings which can be determined during further
tissue typing. These include the HLA-C, HLA-DQ and HLA-DP typings.
As each individual receives his hereditary information partially from
his father and partially from his mother, he also possesses two forms
of each characteristics, which are designated by numbers. Thus the HLA
findings may be HLA-A 2 and 24, HLA-B 7 and 61 and HLA-DR 11 and 13.
Because of the large number of ways in which different tissue typings
may be expressed, there are innumerable possibilities for the
composition of the individual HLA tissue pattern. As the prevalence of
the individual tissue typings in the population also differs greatly,
the probability of finding a donor with the same HLA tissue pattern as
a given patient ranges between about 1:20,000 to much more than 1 to
several millions.
No. The important thing in stem cell transplantation is for the tissue
typings combinations (see HLA characteristics) to match , rather than
the blood groups. It is very complicated to find anything approaching
100% match and it has been compared with looking for the proverbial
needle in the haystack. The donor's blood group is only determined once
the stem cell donor has reached the short list. If donation occurs, the
recipient even assumes his donor's blood group together with the stem
cells.
When you are registered by the DKMS, some of your tissue characteristics
combinations are investigated. There will be no test for specific
pathogens.
The specific request mostly only comes years later. This is why it is
more reasonable only to have the blood tested for specific pathogens -
such as HI viruses and hepatitis viruses (B and C) - when the tissue
characteristics of the potential donor almost totally match with those
of the patient. For all subsequent necessary tests, more blood will be
taken. You will of course be informed of all steps and asked for your
consent.
The patient's health insurance fund will pay for the necessary
investigations and treatment of the live donor and his period in
hospital during the sample collection. The insurance fund also covers
the donor's possible loss of earnings, travel costs and other
non-medical expenses. The DKMS organizes all organisational points for
the donor, who doesn't have to worry about anything. Even the cost
settlement is settled by the DKMS. Of course, the DKMS is also glad to
provide help and advice to the donor with all possible problems.
According to the regulations social security code no. 5, the health
insurance funds may not pay for the registration of new stem cell
donors, but only for the treatment costs leading to the recovery of the
insured party. There is no allocation and no possibility of settlement.
In other words, at registration no-one knows when or if you may be a
possible stem cell donor for some patient somewhere in the world.
If patient's and a donor's data match, the patient's health insurance
fund will take over responsibility for all subsequent costs arising
from possible stem cell transplantation. For example, these may include
costs for more precise investigations - both of the blood sample and of
the potential donor - and costs arising during stem cell donation in
hospital, travelling costs and possible loss of earnings (see question
7).
The health insurance funds also provide support to the DKMS for
so-called stock control. The quality of the data plays a role. For
example, the addresses must be up-date. This is the reason that the
DKMS sends a DKMS donor card to all registered persons. The DKMS writes
to all its potential stem cell donors once a year. This is used to
check their addresses and incidentally provides them with fully
up-dated information. For nothing would be worse than to have found the
needle in the haystack and then be forced to abandon it, as the donor
has moved and not reported his new address.
The DKMS was started in 1991 as a private initiative. At this time
there were just 3,000 registered stem cell donors in Germany and little
hope of help for cancer patients. After the first financial
contributions had been rapidly spent on typing costs, the DKMS was
given start-up support from the German Cancer Aid and the Federal Ministry of Health. However, this support expired at the end of 1994. Since then,
the DKMS has been dependent on financial contributions for further
development of the center. The current costs for registration are now
only 50 Euro, much less than the initial value of 600 DM.
Unfortunately, there cannot be indefinite reductions in price without
forfeiting our claim to quality.
The donor can obtain information through the DKMS about the patient's recovery and can also write to him or her. However, the anonymity of both, donor and patient, is maintained for the first two years after the stem cell transplantation - for reasons connected with data protection. After this period, the DKMS can organize direct contact between donor and patient, if both wish this. This can be in the form of letters, on the phone, or through a personal meeting.
On the other hand it is not possible if the donor or patient lives in a country in which anonymity must be retained according to local laws (for example, Belgium, France, Italy, the Netherlands, Spain). At least here is an anonymous contact possible. Some countries - including Brazil, Finland, Great Britain and Switzerland - allow no contact between donor and patient.
In 40-80% the treatment of patients runs successful. Individual
survival after transplantation depends on the patient's age and state
of health, the time point of the transplantation, the type of
underlying disease and on the occurrence of possible complications.
In this case, an attempt must be made to treat the patient in other ways.
Depending on the type of individual disease, the main forms of
treatment are chemotherapy and radiotherapy. However, stem cell
transplantation is the only form of treatment which has the potential
to cure many patients.
The aim is that the patients should be able to lead an almost normal
life again after release from hospital. However, they must obey some
rules at first. For example, the patient must avoid large groups of
people at first, as this increases the risk of infection. Some patients
develop long lasting rejection reactions, such as rash, hair loss or
reduced production of saliva or tears (see GvHD).
The donor is thoroughly examined several times before the sample is taken, to exclude this possibility.
The complications during the preparatory phase are mostly the well
known side effects of radiotherapy and chemotherapy, such as nausea and
vomiting. Shortly after transplantation, the risk of infection is
increased, as the patient's immune system is greatly weakened after the
preparatory phase and only recovers slowly. Unfortunately, relapses can
also occur, as all cancer cells may not have been destroyed. This means
that leukemia can recur after the transplantation. Another possibility
is that after the transplantation the new stem cells are not compatible
with the patient's body tissues, leading to a reverse rejection
reaction. This complication (see GvHD) can vary in intensity, but can
often be successfully treated. If the donor's stem cells do not take,
or if there is a relapse, the donor may be asked if he is ready to
participate in a new stem cell donation.
After about two to four weeks, the increase in the count of white blood
cells provides the first evidence that the new stem cells are
fulfilling their task and building healthy blood cells. This usually
happens more quickly after transplantation of stimulated peripheral
blood cells than after transfer of bone marrow. If the white blood
cells increase continuously, the patient's chance of a second life also
rises.
The transfer of stem cells from the donor is intravenous, just as with
a blood transfusion. The transplanted stem cells are distributed
throughout the body by the blood stream and spontaneously become
embedded in the patient's bone marrow cavities. This process is known
as "homing". This is where they start to form new and healthy blood
cells. The patient remains in his isolation room for the first two to
four weeks after transplantation, because of the risk of infection.
To reduce the risk of infection, stem cell transplantation after the
preparatory phase takes place in a treatment room which is isolated
from pathogens. Preferably, the transplantation should be performed
within 48 hours of the collection of the stem cells. The day on which
the stem cells are transferred is called "day zero". You will find a
list of German transplantation units in the ZKRD (German Central Bone
Marrow Donor Register) website.
The patient is admitted to hospital about two weeks before
transplantation. After all necessary preliminary tests have been
performed, the actual preparatory phase of the stem cell
transplantation is started. For this purpose, the patient is
transferred to the transplantation ward 7 to 10 days before the
transplantation. His diseased blood building system is treated there
with chemotherapy and/or radiotherapy. The aims of this treatment are
the total destruction of all diseased cells and the suppression of the
immune system, to avoid that the transferred stem cells are rejected.
As the patient's immune system is greatly weakened after the therapy,
the preparatory phase must be partially performed in a so-called
isolation unit - a low germ room. This is the only way that the risk of
a potentially fatal infection can be reduced.
At this stage, the patient is dependent on the donor's stem cells to be able to produce blood himself.
Whether the patient can actually receive a stem cell transplantation
depends on his age, the type and severity of his disease and his
physical condition. An additional important precondition for stem cell
transplantation is of course that a donor with almost identical tissue
characteristics is found.
Stem cell transplantation is predominantly used in patients suffering
from diseases of the blood building system. These include various forms
of leukemia and lymph node cancer in children and adults, the severe
aplastic anaemia, severe congenital immune defects (only in children)
and various diseases of the red blood cells. However, stem cell
transplantation is most frequently used in various forms of leukemia.
In spite of immense medical progress, it is unfortunately still
impossible to cure every patient fully for whom a stem cell donor has
been found. It is of decisive importance that the current therapies
should be improved. This is why the DKMS is participating in a
comprehensive study to investigate the differences between peripheral
blood stem cell donation and bone marrow donation, which is being
performed by the National Marrow Donor Program (NMDP, partner
organisation of the DKMS, based in Minneapolis, USA). It is expected
that the study will also bring new results on how to minimise the
stress on donors during collection of stem cells.
Yes. There are donors who have donated stem cell several times - for
"their" patient and for others. Nevertheless, the DKMS thinks it is
important that the donors should not be subjected to excessive stress.
To "reserve" the donor who has already donated stem cells to "his
patient" for an additional donation if there is a relapse and to
protect him from multiple donations for other patients, the DKMS is
looking for "twins" with identical tissue marker combinations through
the Replacement Donor Program.
Of course, your wishes will be considered. However, either method may
be preferred for medical reasons, depending on the individual
situation. Each patient should in principle be prepared to accept both
methods.
Whatever its size, not every hospital possesses the technical
possibilities or the know-how to perform bone marrow or stem cell
collection.
Stem cell donation should only take place in an experienced collection
center, which has been subject to a proper certification procedure.
This applies to the above named hospitals.
Bone marrow collection from the iliac crest is performed in Dresden,
Essen, Freiburg, Hamburg, Hamelin, Nuremberg, Wiesbaden and Tübingen.
Peripheral stem cell collection can be performed in Dresden, Frankfurt,
Hamelin, Nuremberg or Tübingen.
No. The collection hospital is always in Germany and the stem cell
collection takes place as near as possible to the donor's place of
residence.
As the stem cell or bone marrow collection can only be performed in
special hospitals, a journey may be necessary. This will be organized
by the DKMS. The DKMS will ensure that the donor comes from his place
of residence to the hospital and sees that a hotel room is booked. The
DKMS also organizes the transport of the stem cells or bone marrow to
the patient.
For the donor no costs arise. All payments are settled by the DKMS.
Donation of peripheral stem cells does not require total anaesthesia or admission to hospital. The procedure of peripheral stem cell collection has been used in medicine since 1988 and in the DKMS since 1996. Until today there is no sientific evidence for long term side effects of stimulation with G-CSF. The technique has been used clinically for more than 10 years and, during this period, no long term adverse effects have been observed.
As collection of blood marrow without anaesthesia would be painful,
total anaesthesia is necessary. Physicians have estimated that the risk of
potentially fatal complications after total anaesthesia is less than
about 1:50,000. After collection, the patient may suffer from pain in
the wound and, in isolated cases, from nausea as an after effect of the
anaesthesia. As with any wound, there is also a risk of infection.
Symptoms after bone marrow collection mostly arise from puncture of the
bone marrow (pain receptors in the periosteum), tissue injury and blood
effusion (tissue pain receptors). Pain usually occurs directly after
collection and can vary greatly in duration and intensity. The feeling
is often described as if you had banged into a table leg. The pain
usually subsides after a few days.
After peripheral stem cell collection following stimulation of stem
cell production by the natural substance G-CSF, the donor may suffer
from pain in the limbs, resembling that during flu. This pain can be
treated very well with mild analgesics. The pain subsides immediately
after donation.
Another procedure is peripheral cell collection. This is now used with about 80% of DKMS donors.
In this method, the donor administered giving a growth factor
(substance resembling a hormone) over a period of five days (for
example, at the GP's), by injection under the skin. This substance is
called G-CSF and has been able to be made in the laboratory for some
years. This has the effect that the stem cells (which mostly occur in
the bone marrow) are washed out into the flowing blood.
After the preparatory treatment has been completed, the stem cells can
be collected from blood, using a special procedure (apheresis), as used
in platelet donation. Venous catheters are laid in both arms. Blood
flows from one arm through a so-called cell separator and back into the
body through the second access. Within the cell separator, the stem
cells are separated by centrifugal force from the rest of the blood and
collected for transplantation. This takes place for a maximum of two
consecutive days in the collection center. The donor must not be
admitted to hospital, but spends the night in a hotel.
The time needed for recovery can vary. Many donors feel totally fit
after one to two days. However, others need more time, usually five
days. The donated bone marrow is totally reformed after two weeks.
With bone marrow collection from the iliac crest, the donor must
usually stay in hospital for about three days (first day: admission,;
second day: collection, third day: release). The operation itself lasts
a maximum of about one hour.
For peripheral stem cell collection, the donor is injected under the
skin with a substance resembling a hormone (like insulin for
diabetics). This can be done by the general practitioner, or even by
the donor himself. The actual process of stem cell collection can then
follow in the out-patient clinic and lasts about 3 to 4 hours. A second
collection on the following day may be necessary.
No. This is a wide spread misconception. They have nothing to do with
each other. The spinal cord is totally untouched. There is no danger of
paralysis!
In this method, the necessary stem cells are removed from the donor's
posterior pelvic bone with a puncture needle under total anaesthesia.
Two small incisions or several punctures are needed for this; they heal
rapidly. The collection lasts about 60 minutes. Thereby about 1 litre
bone marrow blood mixture is collected. This corresponds to about 5% of
the total volume of bone marrow and is reformed by the healthy body
within two weeks. The donor is usually admitted to hospital one day
before the collection, remains for observation for one night and then
is usually released home on the following day.
The stem cells which give a sick person the chance of life are mostly
concentrated in the pelvic bone. There are two procedures to isolate
these stem cells: firstly by collecting bone marrow from the iliac
crest and secondly by peripheral cell collection.
The decision for or against stem cell transplantation is difficult for
those involved. There are personal and other reasons to withdraw from a
donation at short notice. This is why you should know that we respect
the donor's decision, whatever it is. It would however be a great pity,
as he had already been identified as a "genetic twin". If however he
has given his consent shortly before the actual transplantation, the
preparatory phase for the patient for the stem cell transplantation
will be initiated. From this point in time, the patient can no longer
survive without subsequent transfer of healthy stem cells from the
donor.
Before the donation, the donor is thoroughly examined, to ensure that
he is fully healthy. The thorough examination is intended to ensure
that the risks of the operation for the donor and patient are as low as
possible. For the bone marrow collection, a sample of the donor's own
blood is taken and conserved about two weeks before the actual
donation. This is usually given back to the donor after the bone marrow
collection. This serves to balance the blood loss during the collection
without problems or risks.
Here you can find information on the preparatory phase for peripheral stem cell collection.
There are no special rules or restrictions for the behaviour of donors
before stem cell donation. However, you should avoid all risks which
could lead to illnesses or sever injuries - which might put the stem
cell donation at risk.
The DKMS depends on financial contributions for the registration of new donors (see: health insurance funds).
The DKMS finances running expenses by cost reimbursement by the health
insurance funds for the care of the center, the performance of
additional typing to identify specific patients and for the
organisation of stem cell collection. This is performed at a high
qualitative level and is tested annually by recognised auditors.
In the event of a stem cell donation, the DKMS always contacts the
donor's employer. From the DKMS's many years of experience, we can say
that the employer usually reacts very positively if an employee is
requested to donate stem cells. Loss of wages may be replaced.
"Legal accident insurance protects all persons who exert themselves for
others or for the public to an exceptional extent. Legal insurance
cover exists, without the necessity of special insurance and includes
blood donors and donors of body tissue." There is thus legal insurance
cover for all bone marrow and stem cell donors.
In addition, the DKMS has taken out two additional accident insurances
for the donor. These insure the operation and the actual stem cell
collection. The journeys to and from the collection center are also
insured. If you wish further information, ask for the information
brochure from the DKMS.
In principle, anyone can organize a drive for the registration of new
stem cell donors for the DKMS The organizers are often relatives or
friends of patients. All employees of a company are often called on to
take part in a registration drive. The management and works council are
then important contacts for the DKMS.
You need courage, imagination, organizational ability and some
persistence. The courage is needed to address themes like financing the
drive or involving individuals or companies. The imagination is needed
to implement your drive- for example in contact with the media. The
organizational talent is needed, as, on the day of the public function,
you will not only require the necessary rooms, but many helping hands.
The persistence is needed to continue if the first attempt is
unsuccessful.
What is most important to us is that we should form a successful team.
Your effort will be rewarded with the success of having actually
achieved progress in the fight against leukemia! For those affected, it
is always a valuable psychological experience to see how many other
people want to help them and other patients.
If you decide to undertake a drive, simply go to page Planning of a drive
Of course the DKMS will not leave you alone. We have years of
experience in the successful planning and performance of registration
drives, involving several thousand helpful people. Apart from advice,
we will supply you with information material, all medical material and
useful contacts.
A registration drive involves a very great deal of work. You should
ensure that other people will help you and should decide who is to do
what.
Maybe you haven't found the answer you were looking for under "frequently asked questions"? Then please write us an email with your question. We will answer it as quickly as possible.