FAQs
Frequently asked questions
Throughout the site you'll find answers to most of your queries but on this page we've listed the most frequently asked. These have been divided into seven main categories:
General topics
Joining the Register
The kind of donors we need and why
Restrictions to joining the Register
Laboratories
Research
Cord blood
General topics
What is Anthony Nolan?
Anthony Nolan saves the lives of those who desperately need stem cell transplants by finding them matching donors. We are the UK's most successful stem cell register, managing and recruiting donors. We also undertake vital research to improve the successful outcome of stem cell transplants.
We are responsible for finding suitable unrelated donors for patients who require stem cell transplants. Fewer than 30% of patients who need stem cell transplants are able to find a compatible donor within their own families. The rest rely on the generosity of strangers who have volunteered to donate stem cells to anyone in need.
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How does Anthony Nolan's Register work?
We save lives thanks to over 400,000 UK residents who have volunteered to donate stem cells to any patient in need. We maintain a database of tissue-typing results of all prospective donors.
When essential stem cells are destroyed by disease or by the treatment to eradicate leukaemia, blood stem cell transplantation from a matching donor gives the greatest chance of recovery. The donor's healthy stem cells are infused into the patient's blood stream and, if accepted (or engrafted), begins producing normal, healthy blood cells in the patient.
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Is there a matching donor for every patient who needs a stem cell transplant?
Over 8,000 patients have been given the gift of life through our register. However, even with over twelve million donors on registers worldwide, a match is not always available. Some patients have rare tissue-types that may be very difficult to match. In these instances, even with everyone's best efforts, we are sometimes unsuccessful in identifying a donor. This is why we urgently need to increase the size and diversity of our register. At any one time, there are approximately 120,000 patients throughout the world needing to find a suitable bone marrow donor. Anthony Nolan alone receives over 17,000 search requests in a year. Therefore we urgently need to recruit more donors to increase their chance of receiving a transplant. You can help us save lives by joining our register here.
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How can I help Anthony Nolan save more lives?
You can help us save lives by joining the register, giving a financial donation to support our work or getting involved in fundraising events. We urgently need your help to raise both money and awareness. Contact us on 0303 303 0303 or click here.
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Who can become a donor?
To join our register, you need to be aged between 16 and 30, (although once on the register, your details will kept until you reach 60). You need to be in good health and fully committed to undergo the donation procedure if required. We specifically need to recruit more young donors, male donors and those of black and minority ethnic backgrounds. For more details call us on 0303 303 0303 or click here.
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How many potential stem cell donors do you have registered?
Not enough. We have a register of over 400,000 potential stem cell donors, but we urgently need more people aged 16-30 to join. In particular we need more young and more male donors and those from UK minority ethnic backgrounds to come forward. Click here to find out more.
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Is Anthony Nolan a charity?
Yes, we are an independent charity. We continually rely on financial support from individuals and companies.
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Does Anthony Nolan spend money on things other than the register?
Yes, we conduct pioneering research into the treatment of blood disorders and improving the effectiveness of stem cell transplants.
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How do I find out more?
To find out more about our lifesaving work please call Anthony Nolan on 0303 303 0303.
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Why do people need stem cell transplants?
Bone marrow, found in the centre of all large bones, is where new primitive blood cells, known as blood stem cells, are produced. Blood stem cells develop into mature blood cells: white cells (needed to fight infection), red cells (needed to carry oxygen to and remove waste from organs and tissues) and platelets (which are needed to stop bleeding).
Joining the Register
Why should I think about joining your register?
If you join our register, you could save a life. You might be the only person in the world who is a match for a patient with a life-threatening illness. It could be one of the most important and rewarding steps you ever take. Click here for more information.
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Who can become a donor?
To join our register, you need to be aged between 16 and 30, (although once on the register, your details will kept until you reach 60). You need to be in good health and fully committed to undergo the donation procedure if required. We need to recruit more young donors, male donors and those of UK black and minority ethnic backgrounds. For more details call us on 0303 303 0303.
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What do I need to know before I join the register?
Joining the register is a long-term commitment to donate stem cells to anyone in need. This commitment, made by our large and diverse group of donors, is what enables us to save lives. It is important that you fully understand what the donation procedure involves before you sign up, so click here.
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What if I can't join the register?
If you can't join the register, your help is still vital and there are a number of other ways in which you can help. You can give a financial donation or get involved in fundraising events. Alternatively, you could encourage others to join the register, particularly young and male volunteers.
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How can I become a donor?
To find out more about how to join the register please call us on 0303 303 0303 or click here.
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If I join the register will I definitely be asked to donate?
The majority of people on the register do not go on to become a donor. You are only called on to donate if you have a similar tissue-type to a specific patient in need of a stem cell transplant. However, each and every individual on the register could be called upon to donate at any time over a period of many years. Please be aware that if you are found to be a suitable donor and decide not to donate, this could be devastating news to the patient facing a life-threatening illness.
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Could a recipient be anywhere in the world?
Yes, a donor could be giving the chance of life to a patient thousands of miles away or to someone just down the road. Whether near or far, you can be sure the person on the receiving end needs your help.
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Do overseas donors help patients in the UK?
Yes, for all patients in the UK, we're responsible for undertaking a worldwide search to find the most suitable donor. By working with similar international registers we can search more than twelve million donors held on over 50 registers across the world.
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What happens when I register?
You will be asked to complete a medical history questionnaire. You can give us a saliva sample, so your tissue-type can be identified. We add this to a confidential computer database. If a patient in need of a transplant has a similar tissue-type to you, you may be selected to donate after undergoing further testing.
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Does it cost anything to join the register?
No, it is free. We will also reimburse any expenses you incur as a result of donating your stem cells. These expenses include: travel expenses, accommodation, loss of earnings and any other out of pocket expenses incurred.
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What are the methods of donation?
There are two methods of donation - the bone marrow harvest and Peripheral Blood Stem Cell collection (PBSC).
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What does a bone marrow harvest involve?
A bone marrow donation under this method requires a two-night stay in hospital. Under general anaesthetic, the cells are extracted from the pelvic bones by sterile needle and syringe. No surgical incision is required and the blood stem cells replace themselves within 21 days.
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Are there any side-effects to bone marrow donation?
For a bone marrow harvest there can be some short-term discomfort in the lower back, and tiredness. For this reason a five-day recuperation period is recommended.
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What does peripheral blood stem cell donation involve?
To collect blood stem cells from the peripheral blood, the cells have to be encouraged to move from the bone marrow where they are made, out into the circulating blood stream. During the five days before the collection the donor receives daily injections to mobilise the blood stem cells, increasing their number in the peripheral blood. These cells can then be collected on a cell separator machine in one or two collections lasting four to five hours each, in a process known as 'apheresis'. You won't need to stay in hospital and you won't need general or spinal anaesthesia.
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Are there any side-effects to peripheral blood stem cell donation?
For blood stem cell donation, flu-like symptoms may be experienced, but these resolve quickly after the collection and donors can return to normal duties in 24 hours.
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Do donor and recipient get to meet?
The majority of our donors and patients never meet. It is essential for the success of bone marrow donor programmes that strict anonymity for donor and patient is maintained, both prior to the donation and for a period after the transplant. This ensures that there can be no suggestion of an unrelated donor being coerced or induced to donate for financial or other reward and to protect the right to privacy of both the patient and donor.
Our policy at Anthony Nolan is that when two years have elapsed, it may be possible to arrange direct contact, but only on the if the recipient instigates it. However, some national policies prohibit totally direct donor/recipient contact.
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Can I be specifically tested for my friend?
It's highly unlikely that two friends will share the same genetic profile. The best hope for any patient lies with the millions of potential donors who are already listed on stem cell registries worldwide. We are committed to matching these volunteer stem cell donors, including your friend, as long as donors are willing to donate to any patient, and meet the Anthony Nolan's eligibility requirements.
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I have already been tested for a member of my family but now I would like to join the register. How do I do this?
Contact us on 0303 303 0303 for the application form to be sent to you or fill it in online. Complete this and forward it together with a copy of your HLA tissue typing results, which you should be able to obtain from the hospital where the testing was done. We will check your medical questionnaire and if you are medically eligible to join the register, we will add your details.
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Could I donate more than once? If so, how often?
After the first donation, you'll be asked if you would like to stay on the register and donate again. Although unusual, we have had several donors who have donated three times. Current policy permits a volunteer to donate blood stem cells up to a maximum of four times.
The kind of donors we need and why
Who can become a donor?
To join our register, you need to be aged between 16 and 30, (although once on the register, your details will kept until you reach 60). You need to be in good health and fully committed to undergo the donation procedure if required. We need to recruit more young donors, male donors and those of UK black and minority ethnic backgrounds. For more details call us on 0303 303 0303 or click here.
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Why do you need to recruit more men?
It is a priority for us to recruit more male donors because men can generally provide greater volumes of blood stem cells than female donors. This helps faster engraftment and the reconstitution of the immune system post-transplant. If there is a choice of donor for a patient in most cases a male donor will be preferred.
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What if I can't join the register?
If you can't join the register your help is still vital. There are a number of other ways in which you can help us save lives. You can help by giving a financial donation, by getting involved in fundraising events or by volunteering. Alternatively, you could encourage others to join the register, particularly young male volunteers.
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Why do I have to be over 16 to join the register?
To be a donor you have to give informed consent. As stem cell donation is voluntary and not of direct benefit to the donor, a guardian/parent is not able to sign on behalf of a minor. We run a program called Register & Be a Lifesaver, which educates students about organ, blood and stem cell donation. Click here for more info.
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Why is the upper age limit to join the register 30?
It is a priority for us to recruit young donors as research has shown an better outcome for stem cell transplants if the donor is younger. If there is a choice of donor for a particular patient, the transplant centre will usually choose the youngest donor. Once you have joined the register you remain on it until you reach 60.
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Why do you need to recruit more ethnic minority donors?
There are currently not enough volunteers on our register from black and minority ethnic communities in the UK. This includes African, African-Caribbean, Asian, Chinese, Eastern European, Mediterranean, as well as donors of mixed race background. For example, of the potential donors listed on the Anthony Nolan register, less than 4% of volunteers are Asian, and the figure is much lower for many other ethnic groups.
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Is the ethnic origin important when matching donors and patients?
Ethnic origin is important when matching donors and patients. The 'markers' that are tested when searching for a suitable stem cell donor are genetically inherited and often unique to a particular race. A patient in need of a transplant is more likely to discover a suitable donor amongst groups of people who share a similar genetic history to them. In practice this means that an African-Caribbean patient, for example, has the greatest opportunity of finding a donor within his or her own ethnic community. There are still too many patients in the UK from black and ethnic minority communities for whom we are unable to find a compatible donor.
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Can you join the register if you can’t speak English?
One of our priorities at Anthony Nolan is the welfare of our donors, and it is our responsibility to ensure that they are fully informed and understand the commitment they are making when they join the register. To ensure that we fulfil this responsibility, we only allow people to join our register if they can understand our literature and give their consent in English. If potential donors don’t understand English, we can’t guarantee that they are giving their informed consent if they are subsequently asked to donate, which would be a breach of our duty of care. We appreciate all interest from people who wish to join the register, and for those who can’t join, there are a number of other ways in which they can help with our lifesaving work.
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Is there more than one bone marrow register in the UK?
Anthony Nolan, The British Bone Marrow Register and The Welsh Bone Marrow Donor Registry are separate registers. We have the largest stem cell register in the UK and are an independent charity. The British Bone Marrow Register and The Welsh Bone Marrow Donor Registry are both part of the National Blood Service.
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Do I need to join more than one register?
No, you only need to join one bone marrow register. All UK patient searches are automatically referred to each of the three UK registries so joining more than one of them would cause duplication and waste valuable resources.
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Does it matter which register I join?
By joining a UK bone marrow register you will be making an extraordinarily generous commitment and increasing the chance each patient has of finding a suitable donor. To join The British Bone Marrow Register or The Welsh Bone Marrow Donor Register you must also be a blood donor.
Restrictions to joining the register
Are there any restrictions to joining the register?
In order to join the register, volunteers have to be medically fit to undergo the donation procedure. For this reason we ask you to complete a medical history questionnaire prior to joining the register, so that we can ensure that you do not have any of the conditions that prohibit stem cell donation. Many of these are similar to those that do not allow blood donation. There are also some exclusion criteria to joining our register which can be obtained by contacting us on 0303 303 0303 or clicking here.
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I am a gay man. Can I join the register?
Your sexuality in itself does not preclude you from joining the register. Everyone wishing to join the register will have to complete a medical questionnaire that also includes several questions relating to lifestyle.
Individuals of all sexualities at risk of transmissible diseases are excluded from giving stem cells and therefore are excluded from joining the register. People who have participated in activities that put them at an increased risk for transmissible diseases, including injection of illegal/non-prescriptive drugs, or who have had unprotected sexual contact with an individual from a high-risk background, are not acceptable as stem cell donors.
Laboratories
What happens to a blood sample after it has been taken?
Every blood sample taken from a prospective donor arrives at Anthony Nolan's Histocompatibility Laboratories for tissue-typing.
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What is a tissue-type?
An individual's tissue-type is defined by the characteristics of six genes (A, B, C, DRB1, DQB1 and DPB1), collectively known as the human leukocyte antigen group (HLA). Testing for HLA groups, known as tissue-typing, is usually performed on a small blood sample and involves analysing the genes that code for the HLA proteins.
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How many different tissue-types are there?
The total number of different tissue-types is not known. The HLA genes that define our tissue-type are very variable. So it is extremely unlikely that two randomly selected individuals would have identical tissue-types.
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What does this mean for stem cell transplants?
The success of stem cell transplantation relies on finding the right HLA match. For a number of patients this match is an HLA identical sibling. However, 70% of patients cannot find a compatible donor amongst their family and they need to find a compatible donor through a stem cell register. Anthony Nolan maintains the largest such register in the UK and is continually looking to increase its size to help the 17,000 patients desperately looking for suitable donors.
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What work is done by your laboratories?
In addition to tissue-typing prospective donors, the laboratories also provide a tissue-typing service for stem cell transplant centres in the UK. The laboratories also support the renal and liver transplant programme of the Royal Free Hospital in London.
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What accreditation do the laboratories have?
The laboratories have achieved accreditation from Clinical Pathology Limited (UK) and European Federation for Immunogenetics.
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What expertise do the laboratories have?
We pride ourselves on having one of the best groups of tissue-typing and immunology experts in the UK. We have established a Donor Selection Advisory Committee. This group of senior Anthony Nolan staff will make available our understanding of the many factors affecting transplant outcome, to advise transplant centres on donor choice.
Research
What is the Research Institute?
Established in 1996, our Research Institute is dedicated to research that aims, in general terms, to improve the outcome of bone marrow transplantation. Both basic and what is called 'translational' research (bringing basic scientific discoveries into clinical application) are carried out at the Anthony Nolan Research Institute.
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What work does it carry out?
Our Research Institute investigates topics related to pre- and post- transplantation practice. For example, how best to achieve an optimum outcome between donors and patients. And how to improve recuperation by preventing the complications of transplantation, namely disease relapse, graft-versus host disease (GvHD), or infectious diseases.
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What are the main areas of your research programme?
The three main problems in stem cell transplantation are graft versus host disease (GvHD), infectious diseases that affect patients after transplants and harnessing the transplanted immune cells to eliminate any residual tumour cells in the patient, the Graft-versus-Leukaemia (GvL) effect.
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What recent scientific articles have come from the Research Institute?
In 2009 we had 23 publications, and already have 21 for 2010.
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I'd like to give a financial donation to Anthony Nolan but I don't support charities that engage in animal testing. Does Anthony Nolan engage in animal testing?
We do NOT use animals in any of the experimental work carried out in our laboratories or the Research Institute. We can achieve significant results and innovate to improve the outcome of stem cell transplantation without the need for using animals.
Cord Blood Bank
What is Cord Blood?
Cord blood is the remaining blood in the umbilical cord and afterbirth when a baby is born. They contain stem cells which can be used in stem cells transplants. Normally the cord and the placenta is thrown away as clinical waste after the birth. We have trained healthcare professionals who can collect and extract the blood only AFTER the safe birth of your baby. For more info on how to donate, click here.
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Why do you need to collect cord blood?
We aim to collect 20,000 cord blood units to our dedicated cord bank over the next five years. This will complement a UK public bank of 50,000 cord units that can be used for lifesaving stem cell transplants. A public bank of this size would allow the UK to meet over 80% of UK transplant requests. Then the NHS wouldn't have to import cord blood from banks overseas, which cost much more.
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How do I register my interest in donating my cord blood?
At present, you can only donate cord blood at King’s College Hospital in London, and the Leicester Royal Infirmary and Leicester General Hospital. There will be more collection centres opening in the near future but at the moment they are the only options. You can ONLY donate if you are booked for ante natal care at either of these three hospitals. To register to donate you can contact us directly on tel 0303 303 0303 to discuss the process further or click here.
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Am I eligible to donate my cord blood?
Most mothers are able to donate their cord blood but we will need to ask a few questions about your lifestyle and medical history, to confirm that the donation would be safe for any patient.
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How is cord blood collected?
Once your baby has been born, and the umbilical cord is usually clamped and cut. Then your cord and the placenta will be passed to one of our trained healthcare professionals who work on the maternity ward. This dedicated collector will collect the blood contained in the placenta and umbilical cord, using a special needle which is connected to a sterile collection bag. This procedure takes only a few minutes in a separate place away from the delivery room.
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Is all cord blood collected and stored?
We can't guarantee that your cord blood will be collected and stored. This may be because:
- An accredited person may not be available to conduct the collection
- Other situations may arise during the labour such as:
- Your temperature is raised and an infection has been identified
- Your membranes rupture prematurely
- The amount may be insufficient
- Mechanical failure with the equipment used
- Other medical issues
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How long is cord blood stored for?
We'll store it at our Cell Therapy centre in Nottingham until we need it for a transplant or research. We freeze the cord blood units and store them in special cyrogenic tanks at temperatures of approximately -190°C. This means we can store them indefinitely.
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When would cord blood be used for research purposes?
Cord blood would only be used in ethically approved research if there are insufficient stem cells to enable us to use it for clinical transplant use.
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How does this differ to private banking of my cord blood?
We run our cord blood bank as a public bank to help any patient who needs a stem cell transplant. There is no cost to you to donate your cord blood to this programme. There are a number of commercial cord blood banks that charge a fee to collect and store your baby’s cord blood for private family use only. If you wish to use one of these companies you need to contact them directly to make your own arrangements for your baby’s cord blood to be collected.
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Why does Anthony Nolan collect cord blood units at a limited number of hospitals?
We don't receive any direct government funding, so there are financial limits to the number of collection units that we can fund. As such, we've adopted a policy to establish collection units at major maternity units, which enjoy both a high birth rate and a diverse population. This helps us to collect a wide variety of tissue-types, which means we can help a wider variety of people.
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Can my baby be cloned using my donation?
No. Cord blood donation will not be used in reproductive cloning. The Human Reproductive Cloning Act 2001 prohibits any attempt to create a child by reproductive cloning.
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