Bone Marrow Register - Collection.europarchive.org

You could save even
more lives, join the...

As a blood donor, you already provide
a vital service to patients who need
blood, and by registering with the
British Bone Marrow Registry you could
help people even more.
What is bone
marrow
Bone marrow is a soft tissue found
in the centre of certain bones in your
body. It is this bone marrow which
creates stem cells. Stem cells are the
‘building blocks’, which can grow into
any of the other normal blood cells
such as red cells, which carry oxygen;
white cells, which fight infection, or
platelets which stop bleeding.
2
Hamzah’s story
Within just a month of joining the
BBMR, Hamzah was found to be a
match for a recipient and donated
life-saving bone marrow. He says
“I would do it again, and I would
encourage more people from ethnic
communities to register”.
Why do we need
bone marrow/
stem cell donors
There are a number of diseases
that prevent a patient’s bone marrow
from working properly. These include
leukaemia and aplastic anaemia as well
as other diseases of the immune system.
Although chemotherapy will
successfully treat some of these
patients, for many the only possibility
of a cure is to have a stem cell
transplant from a healthy donor. In
about 30% of cases, a matched donor
can be found from within the patient’s
family, such as a brother or sister.

Sarah
Thompson
(Patient)
The other 70% of patients have to
rely on a matched volunteer donor,
identified through The British Bone
Marrow Registry (BBMR). We need
to continue to recruit more donors,
particularly from ethnic communities.
This is important as finding a suitable
match, whenever a bone marrow/stem
cell transplant is needed, is often
difficult due to the lack of appropriate
volunteers on the Registry.
What is the British
Bone Marrow
Registry
The British Bone Marrow Registry is a
division of the National Blood Service,
working in co-operation with the other
UK bone marrow/blood donor registries
and the NHS Cord Blood Bank. Stem cell
donations from cord blood can be made
at specialist hospitals within the NHS.
For more information see
www.nhscordblood.co.uk.
The BBMR holds details of stem cell
donors and cord blood donations
from England, Scotland, North Wales
and Northern Ireland. It is responsible
for recruiting, testing and registering
blood donors who volunteer to become
stem cell donors. It is also part of an
international network, performing
searches around the world to find
suitable stem cell donors.
How can I join the
register
You must be aged between 18 and 49
years old (registered before your 50th
birthday) and be a blood donor. You
can join when you next give blood, or
at the same time as your first donation.
We will check that there is no medical
reason preventing you from being both
a blood donor and a stem cell donor.
At the time of your blood donation we
will take an extra blood sample, so that
we can identify your tissue type for the
registry from your DNA – the genetic
material our bodies are made up from.
Please inform the staff at the blood
donation session that you wish to join
the BBMR before your blood donation
is taken. The consent form attached to
this leaflet must be completed at that
time and handed to the member of
staff collecting your blood donation.
Please ask a staff member for a copy
of the form if it is not attached.
www.bbmr.co.uk
3

A micrograph
scan of a stem
cell sitting in
the eye of a
needle.
The register
We will confirm we have received
your sample and once you have
been approved to become a stem cell
donor your details and tissue type will
be put onto the BBMR confidential
computerised register.
We will keep a sample of your DNA for
up to 30 years in case of further, more
detailed tissue typing, to confirm a
match for a patient. Your details will
be held in compliance with the Data
Protection Act and your sample will
not be used for any other tests, nor
will your DNA be shared with any other
organisation.
Your details remain on the register until
your 60th birthday. If at any stage you
no longer qualify to give blood, please
inform the BBMR as you may need to
be taken off the register.
You can ask for your name to be
removed from the BBMR at any time.
Please tell us if you change your
personal details either when you attend
a blood donation session or directly by
calling the donor helpline on
0845 7 711 711.
Bone marrow stem cells. They are the building blocks
which can grow into any of the normal blood cells. These
can be red cells, or one of three types of white cells.
4
0845 7 711 711

Donors from ethnic
communities
Some tissue types are more common
in certain ethnic groups of the
population, meaning that a patient is
more likely to be matched with a donor
from a similar ethnic background.
This also increases the chances of a
successful transplant. The UK
population is made up of people from
many different ethnic communities.
This wide range of tissue types may
help to find potential stem cell donors
for new patients who need transplants,
both here in the UK and overseas.
You are especially needed as a stem
cell donor if you are from an African,
African-Caribbean, Asian, Chinese,
Jewish, Eastern European or
Mediterranean community.
What happens
next
Patients and potential donors are
matched by comparing the white cells
in the blood to reveal tissue types. If
you are identified as a potential donor
for a patient, we will contact you to
talk you through the next steps, and
ask you for a further blood sample for
more extensive tissue typing. If you
have any questions about this you can
ask a member of registry staff.
This is a serious commitment and you
should consider the full implications
for both you and the patient when you
first complete the consent form and
provide a blood sample for testing.
If, however, you do not wish to proceed,
you may withdraw at any stage.
What happens if
I am a match for
a patient
If you are identified as the best possible
match with a patient, you will be invited
to come into one of our Blood Donor
Centres for an explanation of the
procedures from one of our clinical staff.
You will also have a thorough medical
examination by a doctor and you will be
asked to give your consent for a number
of blood tests, to ensure there is no
medical reason why you shouldn’t donate.
Tim Wood
(Patient)
www.bbmr.co.uk 5

Claire’s story
I joined the BBMR after seeing a
leaflet at my usual blood donor
session.
After registering, it was two years
until I was contacted. A few weeks
after the donation I received a
wonderful card through the BBMR,
it was from the donor thanking me
for their donation. You never know
what might lie ahead of you and
whether you might be the person
praying for a match for a loved one.
I feel very proud of my experience
and thrilled that I have been able to
save someone‘s life.
How do I donate
There are two possible ways of
donating stem cells that you may
be asked to consider.
The first, and most frequently used, is
to donate stem cells from circulating
blood. For the four days preceding the
donation a nurse will inject you with
a drug, either at home, at your local
Blood Donor Centre or at a local
hospital. This drug vastly increases
the number of stem cells in your
circulating blood. On the fifth day you
will have a blood test to check that
you have enough circulating stem
cells. You will then be connected to
a cell-separator machine, without the
need for a general anaesthetic. The
machine collects the stem cells from
your blood via a vein in one arm,
returning the blood to your body
through a vein in your other arm. If you
are already a platelet donor you will be
familiar with this type of machine.
Occasionally you may be asked back on
the sixth day for a further donation, if the
dose of cells obtained is not sufficient.
The second method is donation of bone
marrow itself, which involves the removal
of stem cells from your hip bones. This is
done using a needle and syringe under
a general anaesthetic in a hospital.
Although this is not a surgical operation,
there will be marks on the skin made by
the needle. As there may be some
discomfort where the needle has been
inserted, you will need to stay in hospital
for up to 48 hours and have a period of
recovery at home of up to five days.
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0845 7 711 711

Where will I make
the donation
Stem cell donations are given in
hospitals or at one of our Blood Donor
Centres and you can bring someone
with you for support.
After your
donation
For the first twelve months following
your donation we will keep in contact
to ensure you do not experience any
adverse reactions. If you need to take
time off work for the procedure you
will be entitled to re-imbursement of
expenses. These details will be covered
in your medical interview when the
procedures are explained.
What are the risks
Stem cell donation is very safe.
However, no medical procedure is
entirely without risk. Both forms
of stem cell collection mentioned
in this leaflet may involve some
temporary discomfort in your bones
and any small risks involved will be
fully explained during your meetings
with our staff.
What information
will I receive about
the patient
The identity and location of both the
donor and the patient must remain
confidential. We have a duty to take every
precaution to avoid possible identity.
This is to comply with ‘EU Tissue and Cells
Directive (EUTCD)’. All you will know is
that you are performing a very valuable
and life saving procedure for a person
who is in need.
Stem Cell Registries
Bone Marrow Donor Worldwide links
bone marrow donor registries
internationally using only tissue-typing to
establish rapid identification of potential
donors. You can be assured that your
personal details are only available to the
staff of the BBMR and are not available
to international agencies.
How can I get
more information
If you have any further questions, please
contact the National Blood Service Donor
Helpline on 0845 7 711 711.
For general enquiries contact the
National Blood Service Donor Helpline on
0845 7 711 711 or visit www.bbmr.co.uk
www.bbmr.co.uk 7

Sharonjeet’s story
Sharonjeet was no more than eight
months old when her parents first
noticed a dramatic change in her
personality. She had been a lively
baby until then, bubbly and full of
laughter. However, now she had no
appetite, couldn’t stand being out of
their arms, cried constantly and had
a persistent, high temperature.
Something was wrong, it wasn’t just
teething trouble. Sharonjeet was
admitted to Great Ormond Street
Hospital where she was diagnosed with
a very rare blood disorder. A fast acting,
fatal childhood disease. Sharonjeet
needed a stem cell transplant, but no
match could be found.
She underwent a year of chemotherapy
before a non-related match was found
and a transplant carried out.
Sharonjeet is now a happy six year old.
Her parents say they owe it all to stem
cell donors.
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0845 7 711 711

Olivia’s story
In May 1998 Olivia changed from being
a happy, playful toddler to being poorly,
clinging to her mother and frequently
crying. After developing nose bleeds and
a rash, Olivia was in so much pain she
was rushed to Kings Lynn Hospital. Her
mother Karen recalls “Within two hours
of seeing a doctor, we were told Olivia
had acute lymphoblastic leukaemia”.
During the following two years Olivia
underwent intensive chemotherapy and
needed frequent blood transfusions.
By January 2001, after an apparent
recovery, she developed a limp. After a
worrying trip to the doctor her parents
learned that the leukaemia had returned.
Doctors suggested a stem cell transplant
and miraculously a match was found
within two months. Following a period of
isolation and physiotherapy Olivia was well
enough to play with other children again
and today is a healthy 11 year old.
Karen says “We are just so grateful to the
bone marrow donor whose generosity has
let Olivia grow into the bubbly little girl
she is today”.
www.bbmr.co.uk 9

Sarah’s story
In May 2004, Sarah Thompson was
looking forward to a summer
wedding when she was rushed into
hospital. Within just a few hours
she was diagnosed with Leukaemia.
Following four rounds of
chemotherapy, Sarah, a teacher and
life-coach, was in remission, and in
March 2005 she married Mark.
Sadly by Christmas of the same year
the cancer had returned. Sarah
was immediately booked in for
further treatment, but her only
hope for a full recovery was a stem
cell transplant.
Sarah and her family campaigned
tirelessly to highlight the shortage of
stem cell donors from ethnic minority
groups and eventually a match was
found. In November 2006 Sarah
received her life-saving transplant.
Now fully recovered Sarah is still
working along with family and friends
to encourage others to become
donors. She says “I now appreciate life
and live for the moment. If, due to our
campaigning, one other life is saved,
then the whole thing was worth it”.
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0845 7 711 711

Personal details Please print clearly in black ink, using block capitals
Title: Mr/Mrs/Ms/Miss/Other ______________________________________________________
First name/s _____________________________________________________________________
Last name ______________________________________________________________________
Date of Birth (DD/MM/YY) _______________________________________________________
Address _________________________________________________________________________
_________________________________________
Postcode _____________________________
Home phone number ____________________________________________________________
Work phone number ____________________________________________________________
Mobile phone number ___________________________________________________________
Email address ___________________________________________________________________
Place of usual blood donation session _____________________________________________
Are you a member of any other UK Bone Marrow Registry
Eg Anthony Nolan Trust Yes No (Please tick one only)
Ethnicity codes
To which ethnic group do you consider that you belong
WHITE
1A UK/other Northern Europe
1B Southern Europe
1D Jewish
1F Americas/Australia/New Zealand
1G Mediterranean
1H Other
BLACK
2I Africa
2J Caribbean
2K American
2L Other
ASIA & MIDDLE EAST
1C Middle Eastern Arab
1E India
1E Pakistan
1E Bangladesh
3M Chinese
3M Japanese
3O Nepalese/Burmese/Thai/Indonesian
3P Other Asian/Middle Eastern
OTHER
4Q South America
4R Hispanic
4S Other
www.bbmr.co.uk

Bone Marrow Registration and Consent
To be completed by the donor and handed to a staff member
I have read the information on this document and I agree that:
1) A sample will be taken by the National Blood Service
and tested to tissue-type my DNA and I agree for my
details to be held on the British Bone Marrow Registry. Yes No
2) My sample will be stored for up to 30 years to enable
further tissue-typing for a potential match. Yes No
3) I may be approached by the BBMR regarding
participation in ethically approved research projects. Yes No
4) The residual blood/DNA from my sample can be used for
ethically approved, anonymous research projects. Yes No
Signature _______________________________________________________________________________
Name ____________________________________________ Date __________________________
For NBS Collection Staff Use
Date sample taken (DD/MM/YY)
Donor ID number (if available)
Pulse ID number (if available)
For NBS Tissue Typing Laboratory Staff Use
Donation Number Barcode
(if available)
Tissue Type Number_____________________________________________________________________________
BBMR Donor ID Number (if available)
Problem
Date repeat sample requested (DD/MM/YY) ___________________________________________
Date repeat sample taken (DD/MM/YY) _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
Data Protection
All information and data processed by NHS Blood and Transplant is in accordance
with the provisions of the Data Protection Act 1998.
NHS Blood and Transplant
The National Blood Service is part of NHS Blood and Transplant
LC420P Printed on 55% recycled paper.
INF/DDR/HI/001/04 Dec 07