Sickle Cell Awareness Month 2025: Building a Vital Research Resource with Genomics England

Shining a Light on Sickle Cell 

September is a time to raise awareness of sickle cell, the UK’s most common and fastest-growing genetic condition. An estimated 17,000 people in England live with sickle cell, and around 250 people are diagnosed each year. 

Sickle cell is an inherited blood condition that affects the shape and function of red blood cells. This can lead to painful episodes known as crises, as well as long-term complications such as organ damage. Many patients depend on regular blood transfusions to manage their symptoms and stay well, often needing blood from dozens of donors each year. However, finding suitable blood donor matches can be challenging, especially for people of Black heritage. This is why it is absolutely essential to increase blood donations from diverse communities. Not only does it improve treatment for patients directly by creating a larger donor pool, but it also contributes to vital sickle cell research that translates into better treatment outcomes for those living with the condition.

Driving Change Through Research 

In 2024, the NIHR BioResource, in collaboration with Genomics England (through the Diverse Data Initiative) launched the Improving Black Health Outcomes (IBHO) BioResource, a national research initiative focused on understanding health conditions and their unique impact on Black communities. 

A key focus in the early phase of the programme is developing a dedicated cohort of individuals living with sickle cell. Until 30th September 2025, participants are also invited to join Genomics England’s National Genomic Research Library (NGRL) when they sign up to the IBHO BioResource, helping to build a rich and inclusive dataset for future research. 

Since its launch, the IBHO BioResource has welcomed over 4,000 volunteers, including nearly 1,500 people with sickle cell. 

Vicky Hills, Research Recruitment Manager for the IBHO BioResource at the NIHR BioResource, commented:

"Through the IBHO BioResource, the focus on Sickle Cell, and our partnership with Genomics England, we hope to build a meaningful, powerful research resource shaped by lived experiences of our participants and the Sickle Cell community.

"Every person who joins the IBHO BioResource, whether they have a health condition or not, is helping us move towards a future where research is inclusive, impactful, and truly representative. It’s a collective effort, and we’re so grateful to everyone who’s chosen to be part of it."

Our Inclusive Research Mission 

The IBHO BioResource is open to people aged 16 and over from Black African, Black Caribbean, and Black British communities to participate, whether they have a health condition or not. Individuals with a confirmed diagnosis of sickle cell or thalassaemia are also encouraged to take part, regardless of ethnicity. 

By contributing a blood or saliva sample and completing a health and lifestyle questionnaire, participants are helping researchers explore how conditions like sickle cell develop and affect different communities. Participating in this programme means you can help to shape future healthcare strategies and ensure that research findings are relevant and inclusive. 

Hazel Attua, Research Participation and Involvement Manager for the Diverse Data Initiative at Genomics England, reflects:

"Being part of the IBHO programme has been an incredible experience, collaborating to break barriers, drive lasting change in Black health outcomes, and connecting with truly inspiring people along the way."

How to Get Involved 

If you are interested in signing up, please fill out the Expression of Interest form and one of our colleagues from the IBHO Team will get in touch.

To find out more, visit the IBHO BioResource webpage. Check out the IBHO BioResource YouTube playlist for more information on taking part and why health research participation is so important.

Find out how Genomics England is driving sickle cell research through the Diverse Data Initiative.