Frequently Asked Questions

If you are aged between 17 and 55 years and in general good health, you may be able to register as a blood stem cell donor.

For details of our basic requirements and more detailed information on the key conditions that:

• do not prevent you from becoming a blood stem cell donor
• will prevent you from becoming a blood stem cell donor

Eligibility to register as a blood stem cell donor.

DKMS UK can only retain donors who are full-time residents within the United Kingdom. If you have moved abroad or have plans to leave the UK on a permanent basis, you can email our donor support team via info@dkms.org.uk who will be happy to advise on next steps.

Tissue characteristics vary from person to person and between ethnicities. When finding a matching donor, a person’s ethnic background is important. A donor with the same ethnic background as a patient may be a better match than one who comes from an entirely different ethnic background.

This means we need as many people as possible with the widest possible variety of genetic characteristics to register on our database.

If you register with DKMS as a potential blood stem cell donor, we ask you about your ethnic background. This information allows us to organise our database more efficiently, making it easier and faster for doctors to search for a matching donor for their patient.

The most important goal – which all organisations holding registers of potential stem donors are seeking to achieve – is to enable more people to make informed choices about signing up, as every 20 minutes, someone in the UK is diagnosed with blood cancer. In registering people aged 17-55 to the stem cell register, DKMS has been able to facilitate stem cell donations by people in their forties and fifties – both in the UK and overseas – which have offered a wide range of people needing transplants a second chance at life, including those from ethnic minority backgrounds. People of such heritages are currently under-represented on registers, meaning blood cancer patients from these communities face longer waits to find a compatible donor match, and may even pass away whilst waiting.

Several studies show that stem cells from younger donors improve patient outcome. However, in registering people aged 17-55 to the stem cell register, DKMS has been able to facilitate stem cell donations by people in their forties and fifties – both in the UK and overseas – which have offered a wide range of people needing transplants a second chance at life, including those from ethnic minority backgrounds. The upper age limit of 55 years for registering potential donors is for their safety: once registered, potential donors can stay on the register until their 61 birthday.

Anyone between the ages of 17-55 and in general good health can register to become a blood stem cell donor. If you are 17, you can complete the registration process, but will only be added to the registry after your 18th birthday.

The upper age limit is in place to protect the safety of the donor and to provide the best possible treatment for patients. Younger people are more likely to be chosen as donors and are less likely to have health issues that could cause complications with donating. With age there is also an increase in risk from anaesthesia.

Find out more: Eligibility to register as a blood stem cell donor.

• Registration request: You’ll receive an email from us shortly after requesting a swab pack. Be sure to check your junk folder, as sometimes they end up there!
• Swab pack: You should receive your swab pack in the post within four to six working days of registering. If you haven’t received your pack within 10 days, please email info@dkms.org.uk and we will send you another one. Please include your full address with your request. Once you’ve returned your swabs, we will email you to let you know that your swabs have arrived.
• Donor card and personal donor number: It takes approximately six to eight weeks to process your swabs and add you to the DKMS register. When you have been added, we will email you with your digital donor card. On your digital donor card, you will find your personal donor number. Please keep your donor number handy so that if you ever need to contact us, you can quote your donor number and we can quickly access your details.
• Updating your details: Please update your contact details. If your details - name, address, contact details or registered GP - change during this time it's very important to let us know. If you are identified as a potential match for someone in need, our team will be in touch using the contact details you provided at registration.
• Keeping in touch: You may receive updates from time to time about the work we are doing.

If your details change there is no need to register again, simply update your details here.

It’s important to keep your details up to date so we can quickly reach out to you if you are matched with a patient. Please help us by ensuring you use a personal email address and phone number (not work, school or university). If you are a student using a non-personal email address such as a college or university one, it is really important to update your address when you move or finish college or university in order for you to continue being a registered donor.

Please get in touch with us on info@dkms.org.uk if you have any questions about the details that we currently have on record for you.

DKMS treats the collection, processing and storage of the personal data and information of all its registered blood stem cell donors, supporters and stakeholders with the utmost care, consideration, seriousness and responsibility. We are committed to full compliance with all relevant data protection legislation and guidance, including the UK General Data Protection Regulation.

• We work to clear and robust data and information standards and security protocols to ensure that your data is accurate, safe and secure.
• We process only the data and information we need, store it securely, ensure it is accessed or handled only by those staff or third parties that need to see and retain and dispose of it in line with agreed data retention schedules, based upon need for the data or national and international regulation.
• We pseudonymise any data that is used in the search and matching process for blood stem cell donation, including HLA tissue characteristics, age, biological sex, etc. This means that doctors and transplant centres searching the database for a matching donor are only able to see this information.

Where we work with third parties for the purposes of fulfilment, regulation or the search and match process for national and international stem cell donations, then we work with only trusted partners and under legally binding and regulatory compliant data sharing agreements. We will never sell your data to third parties.

For more information on how we look after your personal data, please see our Data Protection Policy and our Privacy Notice.

Contact our Data Management Team, info@dkms.org.uk, who will be able to arrange this for you.

If you are identified as a potential blood stem cell match for someone, we ask that you do not donate blood from the time of confirmatory typing. Your confirmatory typing will take place after you are identified as a potential donor.

Following your donation, we ask you not to donate blood until six months after a peripheral blood stem cell donation and 12 months after a bone marrow donation.

Receiving a blood transfusion may not stop you from registering as a potential blood stem cell donor:

• if you received a transfusion following a one-off loss of blood during pregnancy/childbirth or after trauma you are fine to register
• if you received a transfusion because of a different medical condition, please email us with details about the condition.

Regardless of the reason for the transfusion, if it took place outside of Europe, Australia or North America, just let us know by emailing info@dkms.org.uk.

This very much depends on your medication. If you’re thinking about registering and you’re unsure about whether you can donate while taking your medication, please contact our Medical Team on info@dkms.org.uk.

If you’re already on the registry and you’re identified as a potential match, we will conduct a health screening to determine what medication you are on and whether you can still donate while on this medication.

We will never ask you to stop taking your medication to donate.

You can register as a potential blood stem cell donor even if you are pregnant, as long as you meet all of the other requirements. Please let us know if you are pregnant and when your due date is.

You will be blocked from donor searches during your pregnancy, until six months after your due date. After that, we will include you in searches again unless you instruct us otherwise.

You can register as a potential blood stem cell donor while breastfeeding, however, you will need to be deactivated on the register until you have stopped. It is best to wait until after you have stopped breastfeeding before registering as a potential blood stem cell donor.

If you are not breastfeeding, you need to wait until six months after your baby is born before you can register.

If you are pregnant or thinking of becoming pregnant and would like to donate cord blood, you can do so through the NHS Cord Blood Bank.

DKMS UK is not set up to collect stem cells from cord blood.

No. When you register, we analyse your tissue characteristics so they can be matched with patients in need of a stem cell transplant. We do not check for any infections other than cytomegalovirus (CMV).

If you are identified as a match for a patient, we will carry out a health assessment with you that checks for specific viruses and infectious diseases such as HIV, hepatitis B and hepatitis C. This is to ensure that any such viruses or infectious diseases are not passed onto the transplant patient in need of your blood stem cell donation.

Blood stem cells are collected from donors in one of two ways:

• Peripheral blood stem cell (PBSC) collection takes from the bloodstream. This procedure is used in 90 percent of donations. No surgery is necessary; you can usually leave the clinic on the same day.
• Bone marrow donation is used in 10 percent of donations. This takes place under general anaesthesia using a puncture needle in the iliac crest of the pelvis. Your stay in hospital can last up to three days in total.

• Your stem cell donation: preparation and procedure.

A stem cell donation is comparable to a blood donation, and does not lead to a permanent loss of stem cells.

The body reproduces the blood stem cells within about two weeks. Four weeks after donation, your blood levels are checked. This is to make sure that the relevant blood values have returned to normal.

For blood stem cell transplants, what matters is the best possible match between the tissue characteristics from the donor and patient.

Blood groups are not so important.

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.

Some people donate blood stem cells more than once, either to the same patient or to a different one. If you have blood stem cells removed, your body will regenerate them in a couple of weeks. So it is possible to donate more than once.

To minimise the strain on donors as much as possible, we limit the number of times a donor can donate to twice for either peripheral blood stem cell collections or bone marrow collections.

It is important that you discuss any concerns you may have about your donation with your DKMS coordinator as early on as possible. When you are identified as a match for a patient, you may withdraw from making a donation at short notice for personal or other reasons. We respect your decision, regardless.

However, if you withdraw shortly before the actual transplant, the doctors will have already started the patient’s preparation phase for the blood stem cell transplant, which leaves the patient in a vulnerable state.

The blood stem cell donation and transplant is intended to be confidential and anonymous, as far as identification is concerned between the donor and the patient. This is set out legislation and standards. However, if the patient’s country of residence allows it, we can request an update on their state of health

National guidelines stipulate that donors and patients may only meet in person two years after the donation. In the meantime, donors can contact patients anonymously, sending letters via DKMS if this is permitted by the patient’s country of residence. Some countries outside of the UK do not allow any contact at all.

Find out more

• Contacting the patient you supported

Looking for a matching stem cell donor is like searching for a needle in a haystack. Four in ten patients in the UK and four in ten patients worldwide still do not find a matching donor. That is why we need as many people as possible to register as a blood stem cell donor.

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 percent match, if possible. Search requests are sent to the National Registry, and if a potential donor match is found on the DKMS database, we will be informed and contact the donor immediately.

As soon as you are identified as a potential match, we will:

• contact you via phone, text, email, and
• send you an information and health assessment pack in the post.

Time is of the essence at this stage, so it’s really important that we have the right contact details for you. If any of your contact details - name, address, phone number, email address, registered GP - change, please let us know using our Update Details form.

If you have been identified as a match and you have any questions, you can call our medical team on 020 8747 5660 with your donor ID ready so we can give you more information.

You can register as a potential donors between the ages of 17 to 55. You will remain on the registry until you are 61.

Please let us know if your name, address, contact details or registered GP change during this time.

We know that for DKMS registered donors in the UK, there is a 1 in 800 chance that you will be matched with a transplant patient and donate your stem cells.

Finding a matching donor for a patient is rare, and the chances for a match will vary from individual to individual, depending upon factors such as:

• age
• biological sex
• CMV status, and
• phenotype.

Matches are determined by HLA typing (tissue typing) and there are thousands of characteristics in millions of combinations, so it’s a bit like finding a needle in a haystack. That’s why we need to register as many potential blood stem cell donors as possible.

Find out more: Updating your donor profile.

Confirmatory typing (CT) is the health and medical assessment process that is carried out when you are selected as a potential match for a blood stem cell patient.

The process confirms that your registered HLA tissue typing taken at the time you first registered as a donor is actually correct, as this is fundamentally important for a successful match.

Before any donation takes place, you will be asked:

• to fill out a detailed health questionnaire so we can make sure early on that you are still suitable as a donor
• for a blood sample (your blood draw appointment), which can be taken by your regular GP or at a local hospital. Your sample will then be sent to one of our labs so your tissue (HLA) characteristics can be analysed and checked for other infections such as HIV or hepatitis viruses.

The results of your blood tests will be shared with the patient’s medical team and used to decide whether you are the best possible match for the patient.

We allocate three months from the date of your blood draw appointment:

• to allow the patient’s medical team enough time to have all matched donors tested, and
• for the patient to begin their treatment ready for the transplant.

If you are selected to donate, we will aim to give you as much notice as possible. If there are any important dates when you know you cannot donate, please let us know as we will always try to accommodate your schedule.

If you have been identified as a match and you have any questions, you can call our medical team on 020 8747 5660 with your donor ID ready so we can give you more information.

We currently have specialist donation centres in London, Edinburgh, Manchester and Sheffield.

We appreciate that some donors may have to travel quite a distance to reach these centres, which is why we are working on setting up more centres across the UK.

Find out more

• Covering your costs

The donation process is voluntary, as a donor you will not receive any payment for the stem cells you donate.

DKMS will organise your travel to and from the hospital collection centre and cover the costs associated with your appointments. We can also reimburse your loss of earnings, depending on your circumstances.

• Covering your costs as a donor.

This will vary from donor to donor. DKMS supports donors with the financial aspects and facilitates the logistics of giving a donation.

Find out more

• Covering your costs as a donor

DKMS will cover the journey and food costs of a companion traveling with you from your home to the centre, they just can't go onto the ward with you, as, following COVID-19 regulations, hospitals are limiting the number of visitors to their sites.

This is for your own safety as well as the protection of staff and other donors. We recommend you bring your phone and charger so friends and family can keep you company virtually.

DKMS has insurance policies in place that cover its donors and members of the general public. Our insurance policies for donors cover medical accidents as a result of the stem cell donation process, including trips to and from the collection clinic.

DKMS treats the collection, processing and storage of the personal data and information of all its registered blood stem cell donors, supporters and stakeholders with the utmost care, consideration, seriousness and responsibility. We are committed to full compliance with all relevant data protection legislation and guidance, including the UK General Data Protection Regulation.

• We work to clear and robust data and information standards and security protocols to ensure that your data is accurate, safe and secure.
• We process only the data and information we need, store it securely, ensure it is accessed or handled only by those staff or third parties that need to see and retain and dispose of it in line with agreed data retention schedules, based upon need for the data or national and international regulation.
• We pseudonymise any data that is used in the search and matching process for blood stem cell donation, including HLA tissue characteristics, age, biological sex, etc. This means that doctors and transplant centres searching the database for a matching donor are only able to see this information.

Where we work with third parties for the purposes of fulfilment, regulation or the search and match process for national and international stem cell donations, then we work with only trusted partners and under legally binding and regulatory compliant data sharing agreements. We will never sell your data to third parties.

For more information on how we look after your personal data, please see our Data Protection Policy and our Privacy Notice.

The protection and security of your data is of paramount importance to us here at DKMS. We will only record, process and use your personal data in accordance with your 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 blood stem cell donor.

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 on our secure DKMS 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, gender and donor number).

Whether you love getting active, performing music, whipping up a storm in the kitchen or getting bendy at yoga, our Fundraising Team can help you turn your passion into a great fundraiser. For ideas and advice for holding your own event, visit our Do your own thing webpage. If you'd like to take on a physical challenge, take a look at our fundraising events page.

You can set up your DKMS fundraising page using a website called Enthuse. All money raised through Enthuse comes straight to DKMS, so you don’t need to worry about collecting or paying in anything. Enthuse charge a small processing fee (1.9% + 20p per transaction) to ensure your payment is safely processed.

If you have any further questions or would like any help with your fundraising, please contact us at fundraising@dkms.org.uk.

Congratulations and thank you for thinking of DKMS on such a special occasion! Find out more about supporting us at your special event and supporting DKMS at your wedding.

Contact our Fundraising Team via our online form to let us know what you’re up to and we’ll be in touch about fundraising materials.

If you no longer wish to receive fundraising communications from DKMS, you can change your contact preferences under Question 7 on the Update your details form.

If you want to stop receiving fundraising communications from all charities, you can select to opt-out via the Fundraising Preference Service.

You can either send us a cheque in the post or make a bank transfer.

Cheques: Please make your cheque payable to ‘DKMS Foundation’ and send it to us at the address below with a note about how the money was raised:

Fundraising Team, DKMS

Ashburnham House

Horticultural Place

Castle Row

Chiswick

W4 4JQ

Bank Transfer: Bank transfers can be made directly into our account using the below details. Please use your surname as a reference if possible.

The account details are:

DKMS Foundation, Barclays Bank PLC

Sort code: 20-35-93

Account number: 73395413

If you would like to use a different method of payment, please email fundraising@dkms.org.uk or telephone 020 8747 5656.

We always make every effort to acknowledge and thank everyone who donates to DKMS. Your donation method will determine how you are thanked: either by email or letter. If making a payment online you should have received a confirmation email immediately after making our donation.

If you have not received a receipt or acknowledgment, or you are at all concerned about your donation please get in touch with us by emailing fundraising@dkms.org.uk.

You can make a regular donation either monthly, quarterly or annually by setting up a direct debit online.

To make changes to your direct debit, please email fundraising@dkms.org.uk.

Thank you for thinking of DKMS at this very difficult time and choosing to remember someone special in such a meaningful way. Find out more information about giving in memory.

If you have any questions, please contact Georgina Brookes telephone 020 8747 5656 or email fundraising@dkms.org.uk.

It’s best to put the money into your own bank account and then make a donation either by sending in a cheque or making a bank transfer.

Cheques: Please make your cheque payable to ‘DKMS Foundation’ and send it to us at the address below with a note about how the money was raised:

Fundraising Team, DKMS

Ashburnham House

Horticultural Place

Castle Row

Chiswick

W4 4JQ

Bank Transfer: Bank transfers can be made directly into our account using the below details. Please use your surname as a reference if possible.

The account details are:

DKMS Foundation, Barclays Bank PLC

Sort code: 20-35-93

Account number: 73395413

If you would like to use a different method of payment, please email fundraising@dkms.org.uk or phone 020 8747 5656.

Please contact Caroline Richardson, fundraising@dkms.org.uk for more information.

There are many ways companies can support DKMS and raise vital funds to help save lives:

• Charity of the Year partnerships
• match funding employee donations
• payroll giving
• cause-related marketing, and
• making donations in lieu of client Christmas gifts and cards

are just some of the ways that companies can get involved.

DKMS also works with companies to create mutually beneficial purpose-driven partnerships, as well as offering them the opportunity to become members of the exclusive DKMS £2K Club.

For further information email corporates@dkms.org.uk.

We will ask you to provide details of two referees.

Referees can be friends, colleagues or neighbours, but not a family member. They must be at least 18 years old and should have known you for at least six months.

Each referee should be willing to provide us with a reference and know that we will be contacting them.

We will pay for all of your reasonable out-of-pocket expenses, including travel and lunch, however, we cannot pay childcare expenses.

If you would like to find out more about expense, please contact the Volunteer Manager at volunteering@dkms.org.uk.

Once you’ve been volunteering with us for six months, we’d be happy to provide you with a character reference.