To:

• trust medical and nurse directors and healthcare science leads

cc:

• regional medical directors
• regional chief nurses
• regional healthcare science leads
• integrated care board medical directors and nurse directors

Dear colleagues,           

Sampling and testing for blood group genotyping for people with sickle cell, thalassemia and transfusion dependent rare inherited anaemia

NHS England is working with NHS Blood and Transplant on a national programme of work to better identify blood groups for all current patients in England living with inherited anaemias, including sickle cell disorder, thalassemia and transfusion-dependent rare inherited anaemias.

The programme aims to improve blood typing and therefore matching, to ensure safer transfusions, to reduce alloimmunisation and to improve outcomes. It aims to use a DNA testing array developed by the Blood Transfusion Genomics Consortium to provide extended blood group genotyping and human leukocyte antigen typing. Over time, it will be possible to identify better matched blood for transfusion and so reduce antibody formation.

Sample collection started in January 2024. These samples are currently being collated and DNA is being extracted in preparation for high-throughput testing. The testing itself will start in September 2024.

We need your assistance to ensure we receive blood samples to test all patients.

There has been a low sample submission rate from some hospital trusts and integrated care boards. We need you to encourage and promote patient referrals with colleagues at every opportunity. This will help ensure that all patients with sickle cell and thalassemia and transfusion-dependent rare anaemias attending hospital are invited to have a blood group genotype DNA-based test alongside their routine blood test, even if they have had an extended red cell genotype or phenotype before.

Please refer to the annex for detailed information about how to invite patients and submit specimens.

Further information for hospitals and patients is available on the NHS Blood and Transplant website. If you have any questions, please contact transfusion@nhsbt.nhs.uk.

Thank you for your support.

Yours faithfully,

Professor Bola Owolabi, Director of National Healthcare Inequalities Improvement, NHS England 

Professor Dame Sue Hill, Chief Scientific Officer, England, Senior Responsible Officer for Genomics, NHS England

Duncan Burton, Chief Nursing Officer, NHS England

Dr Gail Miflin, Chief Medical Officer, NHS Blood and Transplant

Professor David Roberts, Medical Director, Pathology, NHS Blood and Transplant

Annex 1 –  operational test information

1. The test request has been added to the Laboratory Information Management System and other information management systems. A SNOMED code for blood group genotyping test is available: ‘1874121000000107 Determination of blood group genotyping of human erythrocyte antigen and human leucocyte antigen using deoxyribonucleic acid microarray analysis (procedure)’. You can view this on the NHS Digital SNOMED CT browser.

2. The test request form is available on the NHS Blood and Transplant website.

3. The most common reason for samples being rejected has been a failure to tick the consent box on the sample referral form. Other reasons for rejection have included the sample date not being provided on the sample, the individual taking the sample not signing the sample tube form and duplicate samples being submitted.

4. Please ensure patients have consented, the consent box is ticked and that samples are sent with a completed form and matching labelling on the sample (including the NHS number for patients in England). If this has not been completed samples cannot be tested.

5. Further information is available on the NHS England website and the NHS Blood and Transplant website. This includes a frequently asked questions (FAQs) page for hospital and lab staff, an FAQ page for patients, as well as a patient information leaflet and a video outlining the Blood Group Genotyping project.

6. Tests should be offered to all patients within the scope of the programme. The benefits of participation should be made clear and invitations should be made as part of routine appointments. Consent should be discussed and noted on the request form.

7. Results will be made available to referring clinical teams through Sunquest’s web-based integrated clinical environment (Sp-ICE) within 1 hour of release. The distribution of results from samples from Northern Ireland, Scotland, Wales and the Channel Islands will follow agreed NHS Blood and Transplant reporting processes.

8. Local clinicians will inform patients of results and take any clinical actions required (for example, an updated blood group genotyping profile might influence the choice of blood for transfusion).

Publication reference: PRN01536