The month of September aims to spread awareness around sickle cell disease - the UK’s most common and fastest growing genetic disorder. Currently around 15,000 individuals are affected by the condition, which causes abnormal development of red blood cells and results in serious life-threatening complications. In order for a sickle cell patient to survive, they require regular blood transfusion treatments from 100 donors per year on average, who are matched by blood type. However, the reality is that only around 50 of these donors are likely to be the best match. Inadequately matched blood means that approximately 17% of sickle cell patients experience negative side effects after a transfusion. The effects range from the patient’s condition deteriorating to, in some very rare cases, death.
What is sickle cell?
Sickle cell is a genetic condition that affects the development of red blood cells, causing them to be sickle cell shaped. The main symptoms include anaemia, increased risk of infections, and pain, including episodes call ‘sickle cell crises’, which happens when blood flow to certain parts of the body become blocked. These crises can cause stroke, blindness and organ damage or failure.
Sickle Cell Awareness Month 2023
This year’s awareness month focuses on encouraging more people from the Black community to donate blood, as Black African and Black Caribbean are both the most underrepresented in blood donation drives and the most disproportionately affected by it. The NHS Blood and Transplant (NHSBT) are urgently calling on 12,000 new Black donors to provide the best possible treatment for the majority ethnicity that is affected by sickle cell. New figures also reveal that the demand for blood to treat sickle cell patients has gone up by 50 percent since 2016, due to the greater use of red cell exchanges.
Speaking on this, Dr Farrukh Shah, Director of Blood Transfusion at NHSBT, said:
"People of Black ancestry are 10 times more likely to have the blood types that match patients on regular blood transfusion programmes.
"Having blood that is better matched is critical for patients with sickle cell. It reduces the risk of transfusion reactions which can cause serious complications, and significantly improves people’s long-term health."
BioResource contribution to Sickle Cell research - RESTORE clinical trial
In collaboration with long-term partner NHSBT, the BioResource recalled volunteers to take part in the RESTORE (recovery and survival of stem cell originated red cells) Trial, which aimed at establishing whether cultured red cells have a survival advantage over the standard donated red cells post-transfusion. Ten volunteers from our general population cohort matching a specific blood group type of NHSBT donors were invited to take part in the trial, which saw a world-first successful transfusion of lab-grown red blood cells. The trial is the first step towards making lab-grown cells available as a future clinical treatment, especially for those who have complex transfusion needs or struggle to find appropriate blood donor matches, such as sickle cell patients.
BioResource contribution to new genetic blood-matching test
Back in June, NHS England announced a world-first rollout of a genetic blood-matching programme, delivered in partnership with NHSBT, which aims to better match patients with donors and reduce negative side effects of transfusions. The NIHR BioResource contributed to the development phase of this new testing array by providing data from 5,000 BioResource volunteers, who are blood donors. Find out more about our involvement in this project in our programme announcement article.
While the genetic blood-matching test for sickle cell (thalassaemia, and rare anaemias) patients hopes to mitigate the increased risk of poorly matched donors, the fact remains that the main source of blood for transfusions comes from people with European ancestry, which means there is less blood available for non-Caucasian groups, namely Black African and Black Caribbean, who are affected by the disorder the most.
It highlights just one of many cases in which non-White groups are disproportionately affected by health inequalities in the UK. Part of this reality stems from a historic lack of representation of these groups in health research - those who are represented directly benefit from research outcomes, such as the development of treatment.
We are currently collaborating with the British Bone Marrow Registry (BBMR) to recruit blood donors of Black ancestry. Via postal invitation donors are invited to join the NIHR BioResource. To date >1,000 donors have been recruited.
We are also working with Genomics England (GEL) to develop a new programme, called the 'Diverse Data Sickle Cell Project', whereby we aim to recruit 7,000 sickle cell patients into our recently launched 'Improving Black Health Outcomes' (IBHO) project (which you can learn more about) in order to further facilitate research into the disease. These patients will be whole genome sequenced for research that seeks to improve treatments and avoid severe progression of sickle cell.
A diverse and inclusive BioResource
We recognise our role in changing this reality by creating a more diverse resource of recallable volunteers so that health research becomes more inclusive.
As part of our long-term mission to increase volunteer diversity, the NIHR BioResource recently completed a 12-week campaign in partnership with community engagement agency Egality Health and eight community-based organisations. The focus was to engage and onboard a new wave of volunteers from South Asian and Black communities. You can learn more about what the campaign consisted of, our successes, key learnings for the future and more in our recent article reflecting on the campaign.
Research Black, who are one of the eight community organisations we partnered with, are dedicated to amplifying patient voices and addressing the underrepresentation of black communities in medical research. In a video for our campaign, London NHS GP and influencer Dr Joyce Omatseye, who works alongside Research Black, explains how BioResource volunteers have contributed to vital sickle cell studies and encourages more people from diverse backgrounds to take part in health research via the NIHR BioResource.
Delighted to have Dr Joyce Omatseye supporting @Researchblackuk & our diversity in research campaign w/@EgalityHealth & partners— NIHR BioResource (@NIHRBioResource) May 23, 2023
She explains how our volunteers have already been in studies supporting #SickleCell patients & invites more to join!
How can you help?
The NIHR BioResource continues to facilitate research into sickle cell disease. However, this would not be possible without the generosity of our volunteers.
If you are interested in volunteering with the BioResource to be part of future research we support, whether or not you have a health condition, we’d love to hear from you.
All of our volunteers are consented to the NIHR BioResource and will be re-contactable to participate in further research, following standard protocols for being a BioResource volunteer.
If you are a researcher interested in working with the NIHR BioResource to support your work, please get in touch.
Want to make a difference?
Our volunteers help to advance health research that benefits generations to come. Every volunteer makes a difference.