Frequently asked questions

This page provides answers to frequently asked questions and explains how you can register with DKMS-BMST and potentially become a lifesaver. For a general overview, our videos answer the main questions around registering with us and making a blood stem cell donation.
About DKMS-BMST

What does the abbreviation DKMS-BMST stand for?

DKMS stands for ‘Deutsche Knochenmarkspenderdatei’, or German Bone Marrow Donor Center. But as we became more international, we extended our mission to include Poland, the US, the UK, Chile, India and South Africa.

BMST stands for 'Bangalore Medical Services Trust'. BMST is a non-profit organization of the Rotary Club of Bangalore and TTK group of companies. Founded in 1984 it was initially set up to provide blood-banking services through its division, the Rotary Bangalore-TTK Blood Bank.

DKMS-BMST careers

The DKMS group is the world’s largest international network of donor centers and grows steadily every year. Inspired by our mission of providing every blood cancer and blood disorder patient with a matching blood stem cell donor we work with passion, enthusiasm and dedication. We work together to promote the sharing of ideas and always encourage creativity. A team in the truest sense of the word, we support each other to achieve our goals. We value diversity and strive to reflect the communities we serve. Our people are at the core of everything we do, together we help give blood cancer & blood disorder patients a second chance of life.

We value diversity and inclusion and are committed to the principles of equal employment opportunity. We comply with all applicable laws prohibiting discrimination or harassment against any applicant or employee. This prohibition includes, without limitation, discrimination based on age, ethnicity, external appearance, gender, national origin, religion, creed, genetic information, sexual orientation, gender identity, pregnancy, childbirth or related medical conditions, marital status, citizenship status, and any other personal characteristic protected by applicable law.

In the fight against blood cancer, we are always looking for the best possible people to join our team!

What qualifications do I need to work for DKMS Foundation India? What kind of professionals are they looking for?

DKMS Foundation India offers a wide range of job opportunities. We need employees for various positions, such as for our donor recruitment, donor request management, data management, IT, accounting, administration, marketing, fundraising & events, and press departments.

We are always keen to meet energetic and talented professionals who would like to join our team. If you wish to be considered for any future positions, you can also send your CV and cover letter to career@dkms-bmst.org

How do I know that my data is secure?

As the world’s largest network of blood stem cell donor centres, DKMS-BMST has a special responsibility to protect the personal and especially sensitive medical data that registered donors entrust to us. We take data privacy very seriously. It goes without saying that we fully comply with the statutory requirements of the EU’s General Data Protection Regulation (GDPR), but we have also committed to an even higher level of data privacy.

General Questions

What do I need my DKMS-BMST donor card for?

When you register as a potential blood stem cell donor, you receive a DKMS-BMST donor card. This will contain your personal DKMS-BMST donor number. It makes our work easier if you keep the donor card close to hand and state your donor number when we contact you.

What is blood cancer/leukemia?

'Blood cancer' is the umbrella term used for a variety of malignant diseases of the blood-forming (hematopoietic) system. A distinction is made between two kinds, depending on how they originated: leukemias and lymphomas. Leukemias begin in the bone marrow, whereas lymphomas start in the lymphatic system. All blood cancers involve the degeneration of certain blood cells, which multiply uncontrollably and suppress the healthy blood-forming system. This prevents the blood from performing vital functions, such as fighting infections, transporting oxygen or stopping bleeding.

The three most common forms of blood cancer are:

What quality projects is DKMS currently running?

DKMS regularly launches new projects to enhance the quality of donor typing and to expand typing profiles. This allows us to improve the quality of the data we have, even for donors who have been registered with us for a long time, because you never know when a donor will match with a patient. If we find we need more information, we contact the donors concerned and ask them to provide a new sample, usually by a regular cheek swab, like when someone registers as a new donor.

DKMS contacts selected donors by post and email as part of the following quality projects:

  • CMV antibody detection: All new donors are now typed including their cytomegalovirus (CMV) status, however, this was not possible in the past. We are now contacting specific donors to ask them for another sample so that we can include this status as part of their profile. CMV antibody detection allows us to analyze whether donors have already been subject to a CMV infection or had no previous contact at all with the virus. The status is also relevant when matching donors with patients.
  • Further typing of transplant-relevant tissue characteristics (e.g. identification of further HLA tissue characteristics, blood group AB0 and Rh., CCR5-receptors and KIR).
  • Health questionnaire: A survey of the medical data of donors who have combinations of tissue characteristics that are common in Europe.

When DKMS contacts you as part of any of these projects, there is no specific patient involved. We are merely proactively assessing further parameters, to improve the quality of our data, which means that we can improve the speed of donor searches, because for a patient looking for a match, sometimes every day counts!

What is the quality of the DKMS typing?

HLA characteristics are the most important factor in identifying a matching donor. In order for a stem cell transplantation to have the highest chance of success, ideally, 10 out of 10 relevant HLA characteristics should match between the patient and the donor. If a patient is fortunate enough to have several matches, other factors will be analyzed to find the optimal match. This is why we test more than 10 HLA characteristics. As part of the initial typing, we also tissue type for further parameters that could prove advantageous, either now or in the future, such as the entire KIR receptor family, MICA/B, CCR5, HLA-DPB1, HLA-E, HLA-DQA1, HLA-DPA1, HLA-DRB3/4/5 and the ABO and Rh blood groups. In addition, our donors are also tested for cytomegalovirus (CMV), a common herpes virus. All of these markers are currently typed at high-resolution when someone registers as a donor.

At DKMS, we use cutting-edge science to continuously expand the typing profiles of donors and to meet or define state-of-the-art standards in technology and medicine. That way, we ensure constant enhancements and even more precision in donor selection. All of these quality improvements are crucial for the benefit of patients.

All the samples we receive are typed at the DKMS Life Science Lab located in Dresden, Germany. The lab is a world leader in HLA diagnostics and accredited to international standards. In 2013, the DKMS Life Science Lab became the first HLA-typing lab in the world to introduce the new sequencing technology NGS (Next Generation Sequencing), for high-parallel, high-throughput typing.

Why is DKMS-BMST keen for people from different parts of the world to sign up?

Tissue characteristics vary from person to person – but they are also different between ethnicities. So when it comes to finding a matching donor, a person’s ethnic background is important. Blood cancer, on the other hand, can happen to anyone. So we need as many people as possible with the widest possible variety of genetic characteristics to register in our database. A donor with the same ethnic background as a patient may be a better match than one who comes from an entirely different background.

If you register with DKMS-BMST as a potential blood stem cell donor, one of the questions we ask you will be about your ethnic background. This information allows us to better organize our database. This could make it easier and faster for doctors to search for a matching donor for their patient.

Does a donor have to have the same blood group as the patient?

For blood stem cell transplants, what matters is not so much the same blood group but the best possible match between the tissue characteristics from the donor and patient. A perfect match is very complicated to find and much like looking for a needle in a haystack. When blood stem cells are transplanted, the recipient acquires the same blood group as the donor.

At most, your blood group would be an additional factor in your selection.

How do I know that my data is secure?

As the world’s largest network of blood stem cell donor centres, DKMS-BMST has a special responsibility to protect the personal and especially sensitive medical data that registered donors entrust to us. We take data privacy very seriously. It goes without saying that we fully comply with the statutory requirements of the EU’s General Data Protection Regulation (GDPR), but we have also committed to an even higher level of data privacy.

What is the DKMS Life Science Lab?

Based in Dresden, Germany the DKMS Life Science Lab GmbH (LSL) is one of the world’s largest and most advanced genotyping laboratories focusing on high-resolution HLA typing for stem cell donor registers. Over 100,000 donor samples a month can be analyzed there.

From the outset, LSL has aimed to incorporate the latest scientific findings and developments into the standard typing process. This has led to the typing profile being extended beyond the standard HLA characteristics to include numerous additional parameters (e.g. ABO, RhD, CCR5, KIR, HLA-E, MICA/B, and CMV IgG).

When fast action is needed, this is the best and quickest way to check whether – and how well – a potential blood stem cell donor matches a blood cancer patient. Thanks to our high-quality typing, search times have decreased, while the chances of a successful transplant have increased.

The DKMS Life Science Lab employs cutting-edge biotechnology procedures. In 2013, for instance, it was the first HLA-typing laboratory in the world to introduce the new NGS technology (Next Generation Sequencing), for high-throughput typing. Today, well over a million potential blood stem cell donors a year are typed using this procedure.

Attached to the DKMS Life Science Lab are a clinical laboratory for patient-based typing or confirmatory typing (CT), and a clinical search unit accredited by the ZKRD (German National Bone Marrow Donor Registry). For more information please visit www.dkms-lab.de

Do registrations expire after a certain period?

Once registered, you will remain in the database, and your pseudonymized details will be made available for national and global searches. They will remain available until you reach your 61st birthday at which point your data will be removed from the database. You can also choose to be taken off the database at any time.

This means it is not necessary to register for a second time, or with another donor centre. We, and each of these organizations, list the relevant information of our donors with the World Marrow Donor Association (WMDA), so registering again would lead to duplication, confusion and additional costs.

If any of your personal details change (if you change your address, for example) please let us know so that we can update our database and reach you as quickly as possible if you are found to be a match for a patient.

Do swabs have an expiry date?

You can generally still use swabs for up to two years as long as they are still sealed in their original packaging. The precise expiry date can be found on the back of the packaging. However, if the package has been opened or the expiry date has passed, a new swab kit can be requested. Once you have done your cheek swabs it is always best if we receive your swabs within 2 to 3 weeks.

What is HLA typing?

HLA stands for human leucocyte antigen. HLA typing is a kind of genetic test used to identify certain individual variations in a person’s immune system. Tissue typing is a procedure in which the tissues of a prospective donor and recipient are tested for compatibility prior to transplantation. Mismatched donor and recipient tissues can lead to rejection of the tissues.

Patients’ questions

When are blood stem cell transplants carried out?

In most cases, blood stem cell transplants are used for patients who have a disorder of the blood-forming system, such as any form of leukemia and lymph node cancer in children and adults, severe aplastic anemia, severe congenital immune defects (in children only), and various disorders of the red blood cells. But the most common reason for a blood stem cell transplant is to treat one of several types of blood cancer.

What are the first signs that a blood stem cell transplant has been a success?

After two to four weeks, an increase in the patient’s white corpuscle count offers an initial indication that the new blood stem cells are doing their job and creating healthy blood cells. If the corpuscles continue steadily increasing, the outlook for the patient improves. The success of the therapy is affected by a range of factors, such as the type of basic illness, the stage at which it was diagnosed and treated with a transplant, the age and general fitness of the patient, possible accompanying illnesses, type of conditioning, and the closeness of the match between patient and donor tissue characteristics.

What happens if no matching donor can be found?

The doctors will try to treat the patient by alternative means, possibly with radio- or chemotherapy, depending on the illness. For many patients, however, a blood stem cell transplant from a matching donor is the only treatment offering any hope of a cure.

Can I register for a specific person?

Potential donors cannot register only to help one specific patient. Worldwide searches, for patients in need of a transplant, include all of the donors in the database. If you register as a donor, your pseudonymized data is automatically made available for worldwide searches.

When a donor registers with DKMS-BMST, their data is pseudonymized and could match with and provide a second chance at life to a patient anywhere in the world. Registering is a serious commitment that requires you to be willing to donate to any patient in need. If you only want to see if you can donate to a particular person, you must be tested privately through the patient’s transplant doctor.

Eligibility & Registration

Who can register as a potential blood stem cell donor?

Any adult between the ages of 18 and 50 and in general good health can become a donor. If you are already registered with any blood stem cell registry, it is not necessary to sign up again. If you suffer or have suffered from a chronic illness or any other severe illness or regularly take medication, please discuss your case with DKMS-BMST.

Key conditions that do not prevent you from becoming a blood stem cell donor:

An enlarged or underactive thyroid, Hashimoto’s thyroiditis (You must be stable and symptom-free, even if you are taking thyroid hormones or iodine. However, you cannot donate if you have Graves’ disease)

An enlarged thyroid gland is often caused by a lack of iodine (iodine deficiency goiter), but it can also be attributed to a lack of thyroid hormones – because a thyroid gland forms increasing amounts of tissue as it attempts to compensate for insufficient hormone production. If you do not have any symptoms and your thyroid medication is properly balanced, there is no reason you cannot become a blood stem cell donor.

If the hypothyroidism is caused by thyroid surgery, there is also nothing to prevent you from joining our register — unless the intervention was for Graves’ disease or thyroid carcinoma.

If the hypothyroidism is caused by an autoimmune disorder of the thyroid gland (Hashimoto’s thyroiditis), you may only be able to donate blood stem cells via a bone marrow collection from the pelvic bone. This point will be clarified if you are identified as a possible match for a patient.

If the hypothyroidism is caused by something other than a pre-existing thyroid condition, you can still sign up as a donor.

Morbus Hashimoto is one of the few autoimmune diseases that are not a major problem in blood stem cell donors. However, the thyroid gland must be properly regulated with medication. In addition, some people with the disorder may at times only be able to donate through a bone marrow collection from the pelvic bone. This point will be clarified as soon as you are identified as a possible match for a patient.

Graves’ disease is an autoimmune disorder of the thyroid gland that causes excessive thyroid production (hyperthyroidism). This can be problematic for both donor and recipient.

High blood pressure (stable and well-regulated)

As a rule, high blood pressure is not an issue when it comes to donating stem cells — but it must be well regulated by diet or medication, and not have damaged the eyes, heart, or blood vessels. If your blood pressure is well-regulated, you can register as a stem cell donor.

Hay fever, slight asthma (without attacks), food allergies

Allergies (including food and medication allergies, and hay fever) are not a problem for potential donors — unless they have previously experienced severe allergic reactions (e.g. allergic shock, Quincke’s edema). Please advise us if you have had severe reactions, as it could affect your suitability as a donor.

Unipolar depression (no impact on managing day-to-day life)

As with many other conditions, what matters is the severity of depression or anxiety. The first thing to do is to find out whether the condition restricts you in any way, and check your general resilience — because donating blood stem cells is an additional mental strain for donors.

The question here is not so much whether a donor will reliably show up at the stem cell donation center but whether they can handle the situation afterward. After all, donating stem cells effectively means you gain a severely ill ‘blood relative’, and many of our donors are very concerned about the wellbeing of their recipient.

The use of psychotropic drugs also poses a particular problem, as they affect the blood count. Neuroleptics especially will prevent you from becoming a potential stem cell donor. Other conditions precluding registration as a stem cell donor include mental illnesses requiring treatment, such as severe depression, borderline syndrome, and any form of psychosis, schizoaffective disorder or bipolar/manic affective disorder.

Slight depression that requires only limited treatment is not an issue, as long as the donor feels fit enough to cope with everyday life. Anyone medicating with less problematic ingredients, such as Citalopram or Fluoxetine, can also still sign up as a stem cell donor.


Who is NOT ABLE TO register as a blood stem cell donor?

The most important exclusion criteria are:

  • Cardiovascular diseases (e.g. heart attack, coronary heart disease)
  • Pulmonary diseases (e.g. severe bronchial asthma)
  • Severe kidney diseases
  • Severe neurological diseases
  • Diseases of the hematopoietic system
  • Thromboses
  • Cancer
  • Metabolic diseases (e.g. diabetes)
  • Autoimmune diseases (e.g. rheumatism, multiple sclerosis)
  • Severe infectious diseases (e.g. HIV, hepatitis C, chronic hepatitis B)
  • Morbid obesity, i.e. a body mass index (BMI) of more than 40 (BMI = weight/height²)
  • Identified as belonging to a risk group for severe infections transferred via blood
  • Severe allergies

DKMS-BMST is legally obligated to comply with the international medical exclusion guidelines for blood stem cell donors.

Obesity, body mass index (BMI) > 40 (BMI=weight/height²)

To register with us or to donate blood stem cells, your body mass index (BMI) must not be over 40 – for various reasons.

For people in general good health, donating blood stem cells does not have any significant risks. However, for people with additional risk factors, there may be some health concerns. Unfortunately, obesity is one such risk factor.

Severe obesity poses a problem because it leads to a degree of risk for the donor with both types of blood stem cell collection procedures. Not only is the anesthetic risk higher with bone marrow donations, but with peripheral blood stem cell collection, it is also difficult to gauge precisely how much medication is needed, which may increase the chances of side-effects.

The health and safety of our donors is our number one priority and the weight limits are in place purely for the protection of our donors.

Systemic autoimmune diseases or other serious chronic diseases (e.g. diabetes, rheumatism)

If you have diabetes mellitus type 1, registering as a potential donor is unfortunately not possible due to health concerns for both you and the potential recipient.

Blood stem cells are a part of the immune system, which means that a donation from a type 1 diabetic could mean that the condition is passed on to the recipient. As the patient’s health is already compromised, it is difficult to predict how their condition might develop. Serious complications would be likely to occur.

In addition, increased blood sugar levels may already have damaged the donor’s nerves and blood vessels to varying degrees, and donating blood stem cells could compromise their health even further.

With diabetes mellitus type II, or type 2 diabetes, some cells become resistant to insulin. This prevents them from absorbing sufficient glucose from the bloodstream. Increased blood sugar levels may already have damaged nerves and blood vessels to varying degrees. Donating blood stem cells could compromise their health even further – so again, we cannot include anyone with type 2 diabetes as a potential blood stem cell donor.

Rheumatoid conditions, even when there are no symptoms, are another factor preventing people from registering. They include rheumatoid arthritis, Bekhterev’s disease, and juvenile arthritis, all of which are autoimmune diseases and therefore mean that unfortunately, you cannot register as a blood stem cell donor.

A stem cell transplant involves the transfer of cells from the immune system, and if the donor’s immune system is damaged, it will have adverse effects on the recipient, compromising their health.

Cancer

(including former patients who have been given the all-clear)
Unfortunately, anyone who has previously had a malignant condition is not able to donate blood stem cells.

If you have ever had a malignant growth (or, to be more precise, one that is not specifically benign) you cannot donate blood or stem cells — no matter how long ago the illness was or how successful the therapy was.

Addictions

(alcohol, drugs, medications)

Occasional marijuana/cannabis consumption is not an issue – although the emphasis here is on the word ‘occasional’.

This is in part because regular drug use raises the question of reliability. It is not that a donor who takes drugs would be any more likely to suffer any complications, but unreliability is extremely problematic. The timing and scheduling of blood stem cell donations and transplants are crucial to the survival chances of the patient.

For you to register, we need to know what drugs you take and for how long you have been taking them. If you have been consuming them for a long time, it might be better not to register, but if you are ready and able to quit, then you are welcome to join us as a potential blood stem cell donor.

Severe cardiovascular diseases

High blood pressure that is successfully regulated or a mitral valve prolapse with no further symptoms do not affect your ability to become a blood stem cell donor. The same goes for people with an unusually high or low resting pulse rate: as long as it is regular, that is all that matters.

However, with most other cardiovascular conditions, requiring treatment or monitoring, the risk of complications when donating blood stem cells is significantly higher. This means that anyone suffering from conditions such as cardiac arrhythmia, damaged vascular walls, arteriosclerosis (especially if blood thinners are needed), heart attacks, strokes, or structural damage to the heart (such as valve defects) is not able to register as a potential blood stem cell donor.

Another factor that would definitely prevent you from donating blood stem cells is frequent or prolonged breathlessness.

If you are being treated for any other conditions, please contact us to check if you can still become a blood stem cell donor.

Factor V Leiden

If you have a heterozygous Factor V Leiden mutation (APC resistance), you can join our register – as long as it can be confirmed that you do not have any further clotting disorders or an increased risk of thrombosis linked to smoking, the contraceptive pill, being overweight, etc and you have not previously suffered from thrombosis.

If the mutation is homozygous, unfortunately, we cannot allow you to register as a donor.

HIV, hepatitis B or C, syphilis

If you have a serious, life-threatening infection such as HIV and if there is no way of proving that you are fully cured (e.g. hepatitis C), we cannot allow you to donate blood stem cells, primarily for the protection of the recipient.

Disorders of the blood or immune system

Disorders of the blood and immune system are problematic because blood stem cells for transplantation come from the blood-forming and immune systems. To minimize the risk to recipients, both of these systems should be working as normally as possible. When blood stem cells are transplanted, acquired disorders can potentially be transplanted with them, as the cells for transplant contain mature cells of the immune system. In addition, some blood disorders can pose an increased risk to the donor: problems with clotting factors, for example, can cause thrombosis or bleeding.

I am already registered with another donor center. Should I register with DKMS-BMST as well?

If you are already registered with any other registry in the country where you are living, you should not re-register. We, and each of these organizations, list the relevant information of our donors with the World Marrow Donor Association (WMDA), so re-registering would lead to duplication, confusion and a waste of resources.

What if I am/become pregnant?

You can still register with us as a potential blood stem cell donor during your pregnancy as long as you fulfill the other requirements for donor suitability. Please let us know whether you are pregnant and what your due date is. From this time and generally, one year after the birth (nursing and recovery time), you will not be able to donate your blood stem cells. After this period has ended, you will once again be able to be matched with a patient searching for an unrelated donor unless we hear otherwise from you.

If I register with DKMS-BMST, will I automatically be tested for HIV?

As part of your registration with DKMS-BMST, your tissue characteristic combinations will be examined. However, no tests for specific infections are carried out. Since specific requests for a blood stem cell donation may not be made until years later, we do not examine you for specific infections such as HIV, Hepatitis B and C, until you are actually being considered as a donor.

Who needs a blood stem cell transplant?

In many cases, a blood stem cell transplant is the only chance of a cure for patients with blood cancer, such as Leukaemia, Lymphoma and Myeloma and blood disorders such as Thalassemia and Aplastic Anaemia.

What happens after registration?

When a potential donor registers with us, their cheek swab samples are sent to the DKMS Life Science Lab in Dresden, Germany for testing. At the lab, the sample is analysed to determine the HLA (Human Leukocyte Antigens) characteristics – a fairly complex procedure that can take up to six weeks. After the HLA has been typed, the data is stored confidentially and made available in an anonymous form via the DKMS registry and registries around the world, via the World Marrow Donor Association. Transplant physicians search these registries for matching donors for their patients. Only donor ID, Gender, date of birth and HLA characteristics are shared with the registries. Once you are on the registry, you will be informed and will receive a welcome email from us.

I'M over 50 years of age, why can't I register?

The safety of all of our donors is our main priority. The age limit is not intended to discriminate. Medical guidelines have been established to protect the safety of the donor and provide the best possible treatment to the patient. Additionally, research shows that cells from younger donors lead to a more successful outcome for the patients.

Does ethnicity affect finding a match?

Ethnic heritage is a very important factor. A patient is most likely to find a matching donor who has the same ethnicity because people from the same ethnic group are more likely to have the same tissue traits. With more than 25,000 known HLA characteristics that can occur in millions of combinations, finding a match is extremely rare. Patients of more diverse ethnic backgrounds also tend to have more diverse HLA types, making it even more difficult to find a match.

Is donating blood stem cells the same as donating blood?

When you register with DKMS-BMST, you are making yourself available as a potential blood stem cell donor for a patient in need of a transplant. You will only be asked to donate if you match with a patient. You will then be asked to donate blood stem cells in a procedure that is similar to donating blood platelets. You can remain a regular blood donor after registering as a stem cell donor, however if you do match with a patient, we ask that you don’t give blood for a month prior to donation and for a few months after.

Can I register as a blood stem cell donor if I’m gay?

Yes. Your sexuality won’t stop you from becoming a potential lifesaver and registering as a blood stem cell donor.

Do registrations expire after a certain period?

Once registered, you will remain in the database, and your pseudonymized details will be made available for national and global searches. They will remain available until you reach your 61st birthday at which point your data will be removed from the database. You can also choose to be taken off the database at any time.

This means it is not necessary to register for a second time, or with another donor centre. We, and each of these organizations, list the relevant information of our donors with the World Marrow Donor Association (WMDA), so registering again would lead to duplication, confusion and additional costs.

If any of your personal details change (if you change your address, for example) please let us know so that we can update our database and reach you as quickly as possible if you are found to be a match for a patient.

How to take a cheek swab?

The swab kit contains three swabs, open the package carefully to remove one swab at a time without touching the head of the swab.

Please use all three buccal swabs.

  • First swab: Rub the buccal swab in a circular motion across the inside of one cheek for 1 minute.
  • Second swab: Repeat it with the second buccal swab across the inside of the other cheek for 1 minute.
  • Third swab: Repeat it with the third buccal swab across the inside of your upper and lower lips. In addition, use the left and right cheek again for 1 minute.

Swab with comfortable pressure in a circular motion, rotating the stick from time to time. Dry the swab for three minutes before putting them back in the swab envelope. Release the sticky tab to close it securely and post it back to us along with the consent form.

Please see our explanatory video here.

How are blood stem cells actually donated?

How does the search for a blood stem cell donor work?

Looking for a matching stem cell donor is like looking for a needle in a haystack. When a blood cancer or blood disorder patient depends on a blood stem cell transplant to survive, they need a donor whose tissue characteristics are a 100% match, if possible. When a person registers as a potential blood stem cell donor, their data is made available for worldwide searches in global donor pool of World Marrow Donor Association (WMDA). When a patient needs a blood stem cell donor, search requests are sent to the WMDA, and if a potential donor is found on the DKMS-BMST database, to match the patient, we will be informed and we will then contact the donor immediately.

Health check and confirmatory typing (CT)

Before any donation takes place, you will be asked to fill out a detailed health questionnaire so that we can make sure early on that you are still suitable as a donor. You will then be asked for a blood sample, which will go for confirmatory typing. Your regular GP will be able to take the blood sample. Your blood will also be checked for other infections, such as HIV or hepatitis viruses. The results of your blood tests will be used to decide whether you really are the best match for the patient.

What happens during a Peripheral blood stem cell (PBSC) donation?

Peripheral blood stem cell (PBSC) donations do not require anaesthetic or admission to hospital. Under this donation method, a sterile needle is placed into a vein in each arm. Blood is drawn through one vein and passed through a machine that collects the stem cells, before the rest of the blood is returned back into the body through the other arm. The procedure, which is called apheresis, is normally completed within 4-6 hours. It is similar to a blood platelet donation. Occasionally a subsequent donation may be required on the following day.

For the five consecutive days leading up to the donation, the growth factor called “Granulocyte colony-stimulating factor (G-CSF),” is injected subcutaneously to the donor. G-CSF occurs naturally in the body and is required in order to increase the number of stem cells in the blood.

The donor may experience some flu-like symptoms while they are receiving the G-CSF injections (e.g. headache, fatigue, nausea). These symptoms disappear within a day or two following the donation and donors can take non-aspirin products (such as Paracetamol or Ibuprofen) for relief from the discomfort.

The PBSC method has been used for DKMS donors around the world since 1996. Extensive research has been undertaken, including by DKMS scientists and there is no evidence of any long-term side effects.

As a donor, how am I insured?

Anyone who makes a blood stem cell donation for the benefit of other people or society as a whole, is covered by statutory accident insurance. This is legally required and covers anyone donating blood or tissue. If you are donating blood stem cells, you do not need to take out any extra insurance, as you will also be covered by this insurance. In addition, this insurance policy also covers the outpatient blood stem cell collection (PBSC), as well as your travel to and from the collection center.

Can you donate blood stem cells more than once?

Some people donate stem cells on more than one occasion, either to the same patient or to different ones. If you have blood stem cells removed, new ones will be generated to replace them, in much the same way as your blood is replaced when you make a blood donation. So it is possible to donate more than once. However, to minimize the strain on donors as far as possible, we try to keep those that have made a donation as backups, just in case their patient has a relapse and more blood stem cells are needed. We also use our Replacement Donor Program to prevent multiple donations. This identifies donors with identical combinations of tissue characteristics so we have a backup for each one.

Will I have a sick certificate to cover my time off for the donation? How do most employers react?

If you are donating blood stem cells via the PBSC method, the G-CSF medication you will receive will not affect your ability to work. However, you will need to take time off work for your medical examination, plus another two days for the blood stem cell collection. You will not need any more time off work after that. If after the donation you happen to become sick, your regular GP will be able to issue a sick certificate for you.

In our experience, the vast majority of employers respond positively to the news that one of their staff is being invited to donate blood stem cells.

When I donate, does it mean I will be missing stem cells?

After a blood stem cell donation, the body quickly regenerates the level of blood stem cells to what they were before the donation. The process is comparable to a blood donation and does not lead to a permanent loss of blood stem cells. The donor’s own immune system will not be weakened.

How is my patient? Can I meet them?

The patient’s condition:

If the patient’s country allows it, we can request an update on their state of health at least three months after the transplant was carried out. In our experience, there is no way of knowing how long it will take for a reply to reach us. If you want to hear about your patient, you will normally be contacted by DKMS-BMST.

Meeting the patient:

International guidelines stipulate that donors and patients may only meet each other in person two years after the donation, which is additionally dependent on the regulations in the patient’s country of residence. Some countries do not allow any contact. In the meantime, if allowed by the regulations in the patient’s country; donors can contact patients anonymously, sending letters or gifts via DKMS-BMST. Due to privacy reasons, DKMS-BMST has no direct contact with patients and often has only a minimal influence on the forwarding of mail to patients. Here, we depend on the support of the hospital treating the patient. Since patients often receive further treatment from another clinic or hospital after the transplantation, delays may occur. After the end of the two-year period, donors and patients may write to each other directly or meet each other in person – again mediated by DKMS-BMST provided both parties agree. Experience over the years has shown that many donors and patients want to get to know each other. Time and time again, meetings between donors and patients are very moving moments. It is not uncommon for lasting friendships to develop.

If you have any other questions, our Donor-Patient Contact department will be happy to help: followup@dkms-bmst.org

What is the difference between a related donor and an unrelated donor?

Tissue characteristics are hereditary, so the chances of finding a matching donor are highest within the patient’s family. About 30 percent of patients find a family member who has the tissue characteristics they are looking for.

Children inherit half of their tissue characteristics from their mother and half from their father. This means that parents are normally only haploidentical, or ‘half-matching’ donors. The highest probability of a match is between siblings, which is why they are the first family members to be tested as potential donors.

If a patient requiring a transplant has siblings, they will be the first to be tested. With young patients, the parents are typed as well. The age and state of health of the various family members is crucial. If no matching donor can be found among the patient’s immediate relatives, the search begins for a compatible unrelated donor in databases around the world.

Can I withdraw from making a donation if I have already agreed to make one?

On being identified as a match for a patient, you may withdraw from making a donation, at short notice, for personal or other reasons. Please note that we respect your decision, regardless. However, if you withdraw your commitment shortly before the actual transplantation, the doctors would have already initiated the patient’s preparation phase for the blood stem cell transplantation and at this point in time, the patient cannot survive without the transplantation of your blood stem cells.

Curing Blood Cancer

Chemotherapy as the chance of a cure

Most types of blood cancer can first be treated with chemotherapy, the aim of which is to simply destroy the cancer cells. Other forms of treatment can be used as well, such as radiation or antibody therapies, or a blood stem cell transplant.

Blood stem cell donation as the last chance

For many patients, a blood stem cell donation is their last chance to beat blood cancer. These patients need a matching donor whose tissue characteristics (HLA characteristics) should match those of the patient 100 percent, if possible. To prepare for the transplant, the patient undergoes chemotherapy to suppress their own immune system, which helps to ensure the body does not reject the donation. After the transplant, the immune system gradually rebuilds itself.

Chemotherapy

With chemotherapy, the patient is given so-called cytostatic drugs to inhibit cell division and destroy the cancer cells. The treatment is performed in a hospital over several cycles, with drugs administered on one or more days followed by a break for the body to recover before the next cycle begins. The drugs can be given in the form of tablets, an injection, or an infusion.

Radiation therapy

Radiation therapy is used to specifically target tumors. The radiation is similar to that in X-rays but considerably higher-energy, which works by damaging the genetic makeup of the cancer cells. This stops them from dividing even further and kills them off. The process also affects healthy cells, but these can regenerate later on.

Antibody therapy

Antibodies are generated by immune cells in the body. They work by recognizing surface structures (antigens) of pathogens and attaching themselves to them. Any cells that are flagged in this way are identified by other immune cells as hostile and destroyed. More and more blood cancers can now be treated with artificially produced antibodies — especially non-Hodgkin lymphoma (NHL), but also chronic lymphocytic leukemia (CLL). They work on the basis of a 'lock and key' principle: the available antibodies are the key and work only on cancer cells with a matching lock, or antigen. If lock and key don’t match, the therapy will not work.

Blood stem cell transplantation

For many blood cancers, transplanting healthy blood stem cells is one possible form of treatment — and often the only chance of a cure. Whether or not a patient can undergo a blood stem cell transplant and what method would be used, depends on numerous factors including their particular diagnosis, age and state of health.

There are three different types of transplant: autologous, allogeneic, and syngeneic.

An autologous blood stem cell transplant uses the patient’s own stem cells, which are harvested from the blood and cleared of cancer cells. The patient is given chemotherapy, and their stem cells are returned to the body.

An allogeneic stem cell transplant uses the blood stem cells of a related or unrelated donor with the closest possible match of tissue characteristics.

A syngeneic transplant is the rarest form of stem cell transplant, as it involves using the cells of identical twins.

Matching donor

One crucial factor in the success of a blood stem cell transplant is the degree of match between the tissue characteristics (HLA) of donor and patient. Tissue characteristics are protein structures on the surfaces of all cells and occur in different combinations in every individual, much like fingerprints. The immune system recognizes from these protein structures whether or not a cell belongs to its own body. If it does, the cell is left intact. If not, it is destroyed. That is why it is essential to find a donor whose HLA characteristics match the patient’s as closely as possible. This way, the new immune system that develops from the donor’s stem cells will accept the patient’s own cells.

Because tissue characteristics are inherited, the best chance of finding a match between donor and patient is within families. Parents are normally only haploidentical, or ‘half-matching’ donors, as a child inherits half of its tissue characteristics from the mother and half from the father. The highest probability of a match is between siblings, which is why they are the first family members to be tested as potential donors.

If there are no matching donors in the patient’s family, the search continues with an attempt to find a compatible unrelated donor. Around the world, over 36 million people have now chosen to register as potential blood stem cell donors, over 10 million of which are within DKMS’s worldwide database. If no suitable donor is found there, the search is extended internationally.

Financial Questions

Why is DKMS-BMST asking for monetary donations?

Our goal is to recruit many more potential blood stem cell donors to expand our database and give every patient battling blood cancer and other blood-related diseases a second chance at life. We do not ask our potential donors for money as we believe expanding the database and supporting patients should be our priority.

However, the entire process of donor registration, kit shipment, HLA typing, finding a matching donor and facilitating the transplant procedure involves expenses that has to be covered by the organization and this where we depend on monetary donations.

As a non-profit organisation, we have made it our mission to provide continuing support to patients. This can only be financed through donations.

What is Section 80G of income tax act?

The deductions under Section 80G are the contributions that you have made to some charitable organizations. However, not all donations are eligible under this section.

If I donate money, will I get a receipt/confirmation?

DKMS-BMST is happy to issue receipts/confirmations for donations. Please provide your name and address. You will receive a successful notification after you complete your donation process. However, we’ll send you a receipt via email, if you fill in the donor details section carefully.

What Tax exemption benefit do I get?

As per the revised tax exemption act, effective April 1, 2017, donations above Rs 500 to DKMS-BMST will be eligible for 50% tax exemption under Section 80G of the Income Tax Act. The exemption is calculated by reducing the donated amount from your taxable salary.

(Example: if your taxable income per year is Rs 200,000 and you make a donation of Rs 5,000 then your net taxable income will become Rs 197,500. Your tax will now be calculated on this new amount basis the prevailing tax rates)

Who will cover the costs of my blood stem cell donation?

Donating blood stem cells is a voluntary act of solidarity with a seriously ill person. There will be no cost to you. When a donor is matched with a patient, DKMS-BMST covers all costs that could be incurred by a donor as a result of the donation process. DKMS-BMST will also cover the costs for a companion to travel with you to the hospital.

It is not necessary to use a donor’s own health insurance. Whilst it is extremely rare to require follow-up care if it is ever needed, the donor’s costs will also be covered by DKMS-BMST. Other than that, we are not legally allowed to make any payments or rewards to the donors for the provision of blood stem cell transplantation.

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