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World first as NHS patients with inherited blood disorders get test to curb transfusion side effects

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Thousands of people with sickle cell disorder and thalassaemia in England now have access a world-first ‘blood matching’ genetic test on the NHS to better match their blood transfusions, reducing the risk of side effects and offering more personalised care.

On Monday, the NHS became the first healthcare system in the world to provide a new blood group genotyping test which is set to transform care for patients living with sickle cell disorder and thalassaemia, with almost 18,000 people in England now being eligible.

The DNA analysis of a patient’s blood groups should enable more accurate matching for people who need transfusions and help find the best compatible blood for patients with complex requirements, with some donor blood being tested in a parallel programme.

Health Minister Andrea Leadsom said: “Thousands of people living with sickle cell disease and thalassaemia will be eligible for this new world-first blood test which is set to transform their care.

“This is a huge step forward in improving the quality of life for people who are living with these blood disorders. This is another example of the NHS leading the way in healthcare”. 

Life-saving transfusions are commonly used to treat rare inherited blood disorders,.

However, around a fifth of patients develop antibodies against certain blood groups following transfusion.

These patients can then experience delays to treatment due to the difficulty in finding enough matching blood and sometimes blood transfusion reactions.

To help improve blood-matching and reduce the risk of antibodies developing, NHS England, in partnership with NHS Blood and Transplant, is encouraging patients with sickle cell, thalassaemia and transfusion-dependent rare inherited anaemias to have the test taken alongside their routine hospital blood tests.

In England, there are around 17,000 people living with sickle cell disorder, with 250 new cases discovered a year.

The condition can result in severe organ damage and intense pain if damaged red blood cells block vessels and restrict oxygen supply – it is more common in people of Black African and Caribbean heritage.

People with thalassaemia cannot produce enough haemoglobin, which is used by red blood cells to carry oxygen around the body, leading to severe anaemia, which can be fatal if not treated.

Thalassaemia is mainly seen in those with an Asian, Middle Eastern, Southern Mediterranean heritage, with about 800 patients in England and fewer than 50 new cases each year.

The blood group genotyping test will also help patients living with transfusion-dependent rare inherited anaemias, such as Diamond Blackfan anaemia – a disorder that affects people’s production of red blood cells.

Professor Bola Owolabi is Director of the National Healthcare Inequalities Improvement Programme at NHS England.

She said:This world-first test is yet another example of the NHS leading the way to transform care and improve outcomes and quality of life for thousands of patients with sickle cell disorder and thalassaemia.

“Being able to provide high-quality and more personalised care to people with inherited blood disorders is an important step forward in helping to reduce health inequalities and this innovative test will greatly improve quality of life for people living with these disorders.

“I urge those eligible to ask their clinical teams about the test and to accept if they are invited to take part.” 

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