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First patients with inherited blood disorders to get world-first NHS test to curb transfusion side effects

By January 31, 2024No Comments

From this week, thousands of people with sickle cell disorder and thalassaemia in England will 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.

The NHS becomes 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 may allow for 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.

Life-saving transfusions are commonly used to treat rare inherited blood disorders, but around a fifth of patients develop antibodies against certain blood groups following transfusion. They 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 this 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 a year. The disorder 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, causing 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 less 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, Director of the National Healthcare Inequalities Improvement Programme at NHS England 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.” 

Dawn