Extended Blood Group Testing
for Patients with Sickle Cell and
Thalassaemia Disorders
Frequently Asked
Questions
1. I have Sickle Cell Disease or Thalassaemia. What is this blood group testing?
All people inherit specific labels on the surface of their red cells. These do not change and different
people have different types. These labels are called antigens and are known collectively as blood groups.
We are offering to test your blood sample so a fuller blood group is known, rather than just the basic one.
This is known as genotyping and following your test your blood group information would be potentially
available to laboratory staff involved in your care at whichever hospital in England you attend.
2. Can anyone with Sickle Cell or Thalassaemia have the test?
During this time, patients with Sickle Cell or Thalassaemia (not
carrier or trait) who receive their care at hospitals in England
may be offered the test. This is best organised through your
Sickle Cell or Thalassaemia team.
3. How will this benefit me? Will I see any difference in
the care I receive?
We are offering centralised blood group testing to all Sickle
Cell and Thalassaemia patients to benefit your care, so that
the results can be available to other hospitals around the
country. New technology is now available which means that
blood group testing can even be done after a patient has
received a blood transfusion – which will particularly benefit people on regular transfusions. For all
patients, the testing only needs to be completed once.
You may not see any noticeable difference in how your treatment and care is actually delivered;
however this testing will help the hospital staff involved in your care to understand your blood
group. We hope that by examining the more detailed aspects of blood grouping for people with
Sickle Cell or Thalassaemia, that we will better understand the level of matching needed for you to
receive blood products. Even if you have not needed a transfusion before, we would still encourage
you to have this testing done, as it may benefit you in the future.
4. How is the testing done?
 A sample of your blood will be taken by your doctor when you have a routine appointment,
as a source of your individual DNA.
 It will be taken in exactly the same way as any other blood test, using the same collection
bottle and technique as doctors would use to find out your basic blood group.
 We recommend that you check the sample yourself - if staff incorrectly label or leave out
information, the sample will be discarded.
5. What should I check on the sample and form, and what happens after the test?
 Check the form is labelled: “Sickle Cell/Thalassaemia (or use the code HGP) – sample to
NHSBT for genotype” and that your details are filled in correctly.
The sample must be labelled in the same way as your regular transfusion samples.
The form and sample must be labelled with:
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 First name and last name
 Date of birth
 Hospital number or NHS number
 Date and time of collection
 Signature of person taking the sample
Checking will help to make sure the hospital laboratory processes it properly.
The hospital laboratory will then forward it to NHSBT with a special form attached. NHSBT will look
at the part of DNA that determines your detailed blood group.
6. I have had blood group testing done before – what’s new and why is this being done now?
Clinical guidelines for transfusion set out that all patients with Sickle Cell and Thalassaemia should
have this testing performed at a basic level. Some Sickle Cell and Thalassaemia patients will
therefore have had basic blood group testing done before. However, a recent large audit showed
that this was not always the case. Even when these tests have been done, the results are not easily
accessible to other hospitals. Also, we are starting to understand more that the basic techniques of
blood group testing may not be sufficient in patients from minority ethnic groups.
We are able to offer the more extensive testing at no additional cost to until the end of June 2016 and would like to test the blood groups of as many people with Sickle Cell or Thalassaemia as
possible. After this time, requests from your team for this testing would incur extra charges.
7. What if I’m not offered the testing – can I request this myself?
Yes – in fact we would encourage you to ask your Sickle Cell or Thalassaemia team about it. We
appreciate that medical and nursing staff are very busy and may overlook this opportunity, so
patient empowerment is very
important.
We expect most samples to
be taken at a routine hospital
appointment, and information
about the initiative will be
shared with staff likely to be
dealing with your care.
However, you may ask for this
testing if you are not offered it
routinely. Should your team
require further information,
clinical details about the
testing will also be available
via the NHSBT Hospitals and
Science website here.
8. What happens to my
blood sample?
The blood sample will be processed centrally by NHSBT at the International Blood Group
Reference Laboratory (IBGRL) in Filton, Bristol. The results of the blood group testing will be
securely held on an existing database. This is NHSBT’s Specialist Services Electronic Reporting
System (‘Sp-ICE’) computer system - which allows hospital transfusion laboratories to access
approved results from NHSBT.
NHSBT is committed to protecting your personal information and maintaining our compliance with
the Data Protection Act 1998. The Act controls the way in which we use your personal information,
including how it is obtained, recorded, held, used, shared and disposed of. Further details can be
found at http://www.nhsbt.nhs.uk/who-we-are/information-governance/
DNA from your blood sample will not be used for research but we intend to keep it for ten years, so
that we can perform additional testing which may benefit your individual care, as new tests become
available. After this time the DNA will be destroyed.
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9. What happens after I have the sample
taken?
Test results will be accessible to hospital
transfusion laboratories from Spring 2016. Due
to the testing process it may take up to 8 weeks
after your sample is taken, before your results
are made available. Results will be reported
directly to the hospital laboratory from where it
was sent and will be stored securely in an
NHSBT database. Paper copies of these results
are not produced but the results will then be
accessible to the laboratory staff involved in
your care at whichever hospital in England you
go to under your NHS number.
10. What if I go to a different hospital for
treatment?
Laboratory staff will always need to be told to
look for your results if you attend a different
hospital.

You may ask your team to check that
the laboratory staff are aware that a
sample has been processed on you already.

The laboratory staff may then put that result on the normal hospital system for your team
to see – but your results will not appear automatically.
11. If I want to discuss my results or have any other questions about the testing,
who should I speak to?
If you have any questions about this testing, please contact your Sickle Cell/Thalassaemia team. If
they are unable to resolve your query, please email [email protected] and
include the following details:




Your name
The hospital where you usually
receive your care
Your Consultant Haematologist’s
name
Your contact details
We aim to acknowledge your email
within seven days but if you have any
urgent clinical queries please contact the
Sickle Cell/Thalassaemia team
overseeing your care.
1415432
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