For someone with blood cancer, a stem cell transplant could be their last chance of survival. Your support could help us give that person, their family and their friends a second chance of life.
Joining Stem Cell Registry: The steps
Donation: The process explained
Stem Cell Crisis within Black Community
There is a dire shortage of bone marrow donors from the black community and indeed from the BAME (Black, Asian and Minority Ethnic) community. The scale of the donation crisis in BAME communities is growing and dire shortage of bone marrow donors is huge.
Only 61% of BAME patients in need of a stem cell transplant find a suitably matched donor, compared to 96% of White Northern European patients.
BAME donors make up 15% of the stem cell register while the black donors make up 2% of potential donors on the British Bone Marrow Registry.
The chance of a BAME patient finding the best possible match is 20%, whereas the chance of a White Northern European patient finding the best possible match is 69%. Although people from ethnic minority groups can receive donations from white people, the best match is often from a person with the same ethnic background.
The trust usually hold awareness drive and encourage people from BAME community to register into stem cell donor registry; as part of our awareness campaign, we address the stereotype, myth and negative rhetoric relating to bone marrow donation. Finally the trust support patients and families affected with leukaemia by offering practical and emotional support.
CHECK YOUR ELIGIBILITY
Your age, location and current health status are important. Check to see if you can become a blood stem cell donor.
Frequently Asked Questions (FAQs)
Stem cells are cells that have the potential to develop into some or many different cell types in the body, depending on whether they are multipotent or pluripotent. Serving as a sort of repair system, they can theoretically divide without limit to replenish other cells for as long as the person or animal is still alive. When a stem cell divides, each “daughter” cell has the potential to either remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell.
Donating blood stem cells is similar to giving blood in 90% of cases. However, whether a donor and a patient in need of a blood stem cell transplant are a suitable match is decided on the basis of their human leukocyte antigen (HLA) type (tissue type), rather than on the basis of their blood type.
When you register as a potential blood stem cell donor, you complete a cheek swab which is then analysed at our lab to establish your tissue type. If your tissue type matches that of someone in need, we will be in contact as soon as possible – you could end up saving someone’s life!
Peripheral Stem Cell Donation – (method used in over 90% of donations):
A peripheral blood stem cell donation is performed as an out-patient procedure and you will not be required to have a general anaesthetic. This technique has been applied in medicine since 1988 and has been performed by DKMS (Delete Blood Cancer UK) since 1996. According to our most recent research, no known long term effects have ever been recorded for either the procedure of donating or for the G-CSF injections that you would receive prior to the donation.
Bone Marrow Collection – (method used in less than 10% of cases):
A general anaesthetic is necessary for the bone marrow collection. The risk of life-threatening complications during any general anaesthetic is estimated by doctors at less than around 1:50,000. After the collection, local wound pain and in some cases nausea can occur as an after-effect of the general anaesthetic. Furthermore, a risk of infection exists to the same extent as it does for any wound. There are no known risks associated with this procedure for donating bone marrow.
Anyone between the ages of 18-55 and in general good health can become a potential blood stem cell donor. Pre-registration is possible from the age of 17. You must also be permanently living in the UK.
WHAT EXCLUDES SOMEONE FROM BECOMING A POTENTIAL BLOOD STEM CELL DONOR?
- WEIGHT UNDER 7 STONE 12LBS/50KG
- OBESITY (E.G. BODY MASS INDEX (BMI)>40)
- SEVERE ILLNESSES OF THE CENTRAL NERVOUS SYSTEM OR MENTAL ILLNESS
- SYSTEMATIC AUTOIMMUNE DISEASES OR OTHER SEVERE CHRONIC ILLNESSES (E.G. DIABETES OR RHEUMATISM)
- CANCER (INCLUDING BEING CANCER-FREE, BUT HAVING HAD CANCER IN THE PAST)
- ADDICTION (ALCOHOL, ILLICIT OR PRESCRIPTION DRUGS)
- SEVERE HEART DISEASES
- SEVERE LUNG DISEASES
- SEVERE KIDNEY DISEASES
- SEVERE METABOLIC DISEASES
- SEVERE TROPICAL INFECTIOUS DISEASES
- INFECTIOUS DISEASES LIKE HIV, HEPATITIS B OR HEPATITIS C, AND SYPHILIS
- DISEASES OF THE HAEMATOPOIETIC SYSTEM (BLOOD DISORDERS)
We have a lack of black, Asian and minority ethnic (BAME) potential donors. We urgently need more, so we can help more BAME people in need of lifesaving transplants.
Currently, only 60% of transplant recipients receive the best possible match, and this drops dramatically to 20% if you’re from a black, Asian or ethnic minority background. By building and diversifying our register we will be able provide the best match to even more people with blood cancer.
We’ll transport it to our partners laboratories for it to be tested and record your ‘tissue type’. Then every time someone needs a transplant, we’ll compare their tissue type to yours – and to people on our register and registers across the world.
What is a tissue type?
Someone’s tissue type is defined by the characteristics of six genes (HLA-A, -B, -C, -DRB1, -DQB1 and -DPB1), collectively known as the human leukocyte antigen (HLA) genes.
Anthony Nolan, The British Bone Marrow Register (operated by NHS Blood & Transplant), The Welsh Bone Marrow Donor Registry (operated by the Welsh Blood Service) and DKMS UK all recruit donors in the UK.
All these organisations add their donors to a single UK registry
No, you only need to join one bone marrow register. All potential donors in the UK are added to a single registry managed by Anthony Nolan. Joining more than one would cause duplication and waste valuable resources.
Before the collection, you will be examined thoroughly by a doctor to ensure that you are in good general health. This comprehensive examination ensures that the stem cell collection will take place in as risk-free a way as possible, for you and for the patient.
Before the stem cell collection, you do not need to comply with any particular rules of conduct or limitations. However, you should avoid any and all risks that could lead to illnesses or serious injuries which would subsequently put the stem cell donation at risk.
There are two methods of donating blood stem cells. 90% of the time, the method of donation is peripheral blood stem cell collection. In this method, a thin sterile needle takes blood from one of the donor’s arms and a machine extracts the blood stem cells from it. The donor’s blood is then returned to them through their other arm. This is an outpatient procedure that is usually completed in 4-6 hours.
Bone marrow is used as the method of donation for the remaining 10% of the time. Bone marrow is not extracted from the spine, but from the pelvic bone using a special thin sterile needle.
When blood stem cells are collected from a donor, they are infused into the patient and move through the bloodstream to the bone marrow where they belong. They then settle in the bone marrow and engraft (begin to increase in numbers and produce red blood cells, white blood cells and platelets), resulting in the donor’s healthy blood stem cells replacing the patient’s diseased cells. This enables the immune system and blood making system to be restored.
As blood stem cells are responsible for making the blood and immune systems, the donor’s blood group and immune system will be transferred to the recipient.
For 40-80% of patients who have a stem cell transplant, the treatment is successful. The survival time after a transplant depends on many different factors, including the age and health condition of the patient, the timing of the donation, the type of underlying disease and on the emergence of potential complications.
Stem cells may be pluripotent or multipotent.
- Pluripotent stem cells can give rise to any type of cell in the body except those needed to support and develop a fetus in the womb.
- Stem cells that can give rise only to a small number of different cell types are called multipotent.
There are several sources of stem cells. Pluripotent stem cells can be isolated from human embryos that are a few days old. Cells from these embryos can be used to create pluripotent stem cell “lines” —cell cultures that can be grown indefinitely in the laboratory. Pluripotent stem cell lines have also been developed from fetal tissue (older than 8 weeks of development).
In late 2007, scientists identified conditions that would allow some specialized adult human cells to be reprogrammed genetically to assume a stem cell-like state. These stem cells are called induced pluripotent stem cells (iPSCs). IPSCs are adult cells that have been genetically reprogrammed to an embryonic stem cell–like state by being forced to express genes and factors important for maintaining the defining properties of embryonic stem cells. Although these cells meet the defining criteria for pluripotent stem cells, it is not known if iPSCs and embryonic stem cells differ in clinically significant ways. Mouse iPSCs were first reported in 2006, and human iPSCs were first reported in late 2007. Mouse iPSCs demonstrate important characteristics of pluripotent stem cells, including expressing stem cell markers, forming tumors containing cells from all three germ layers, and being able to contribute to many different tissues when injected into mouse embryos at a very early stage in development. Human iPSCs also express stem cell markers and are capable of generating cells characteristic of all three germ layers.
Although additional research is needed, iPSCs are already useful tools for drug development and modeling of diseases, and scientists hope to use them in transplantation medicine. Viruses are currently used to introduce the reprogramming factors into adult cells, and this process must be carefully controlled and tested before the technique can lead to useful treatments for humans. In animal studies, the virus used to introduce the stem cell factors sometimes causes cancers. Researchers are currently investigating non-viral delivery strategies.
Non-embryonic (including adult and umbilical cord blood) stem cells have been identified in many organs and tissues. Typically there is a very small number of multipotent stem cells in each tissue, and these cells have a limited capacity for proliferation, thus making it difficult to generate large quantities of these cells in the laboratory. Stem cells are thought to reside in a specific area of each tissue (called a “stem cell niche”) where they may remain quiescent (non-dividing) for many years until they are activated by a normal need for more cells, or by disease or tissue injury. These cells are also called somatic stem cells.
Embryonic stem cells
Embryonic stem cells are derived from the undifferentiated inner mass of an embryo. They are able to multiply and grow into a human being when in the womb.
The use of embryonic stem cells for medical treatment is currently against the legislation. They are under very strict conditions with scientists being able to study them but not use them in any treatments unless part of a research study.
Adult stem cells
Adult stem cells are found in the fully-grown human and have potential to differentiate into various tissues such as nerves, muscles, bone and cartilage.
These cells are less versatile than embryonic stem cells but can divide to replenish dying cells and regenerate damaged tissues.
There are two main types of stem cells in the adult. One is in the bone marrow and the other is found in fat (adipose) tissue.
Fat Derived stem cells
Bone Marrow Derived stem cells
KKLT and its associate partners only records, processes and makes use of your personal data in accordance with your informed consent. We adhere to legal guidelines on the use of any data and only keep what is legally permissible and necessary in order to find a suitable stem cell donor.
The protection and security of your data is of paramount importance to us. We are registered and adhere to the Data Protection Act 2018 and ensure that all employees are fully up to date and trained in this Act. Your personal data will be stored in secure database and only your anonymised data will be transmitted to registries to find out if you are a potential match for a patient (data such as HLA tissue characteristics, age and gender and donor number).