Genomics England drives Sickle Cell research through the Diverse Data Initiative
At Genomics England, we are committed to transforming health outcomes through innovation in genomics that benefit all patients, regardless of their background. Our Diverse Data Initiative is leading the charge, with a strong focus on Sickle Cell, the most common rare genetic condition in the UK, disproportionally affecting people from Black communities.
Breaking new ground in sickle cell research
Our Genomics in Sickle Cell Research Initiative is advancing this vital work with three core objectives:
- Building a world-leading Sickle Cell genomics research resource to drive better health outcomes
- Collaborating with patients, carers, and healthcare groups to ensure research priorities reflect real-world needs
- Raising awareness of the power of genomics research to transform lives for those affected by Sickle Cell
A growing genomics resource
We are proud to partner with the Improving Black Health Outcomes (IBHO) BioResource, a pioneering research programme focused on improving our understanding of health conditions and their unique impacts on people from Black ethnic backgrounds. Over 800 participants have already joined the effort, including more than 350 individuals living with Sickle Cell. Participants can be part of the Genomics England National Genomic Research Library (NGRL). Their contributions are invaluable for understanding the condition and driving the development of better treatments. We remain incredibly grateful to all participants who put their trust, and their data into our hands.
Explore how we securely store and use data here.
The initiative has received enthusiastic support from the community with John James, CEO of the Sickle Cell Society, emphasising the transformative potential of genomics research for addressing sickle cell. Principal investigator Dr. Juliana Onwumere and participants Paul and Stephanie - who have generously shared their lived experiences and consented to data usage in the NGRL- have also offered invaluable insights into the impact of this work.
Helping to define research priorities
In partnership with The James Lind Alliance and The Sickle Cell Society, we have launched a Priority Setting Partnership to shape research priorities.
- We are asking patients, carriers, family members, carers, and healthcare professionals to take the survey and share their perspectives so that this initiative meets the needs of the Sickle Cell community.
- Spread the word: Encourage others to take part and amplify their voices. The first survey runs until spring, with a follow-up survey to come.
Engaging the community
Our commitment to the Sickle Cell community goes beyond research. During Sickle Cell Awareness Month, we:
- Hosted the “Behind the Genes” podcast and amplified the voices of those with sickle cell
- Supported a two-part documentary led by Bristol ambassador Primrose Granville and Genomics England’s Head of Engagement, Yufan Chen, highlighting the impact of Sickle Cell and the transformative potential of genomic research. Part 1 of the series brings together individuals actively contributing to research with lived experience to help raise awareness. Part 2 emphasises the importance of genomic research in tackling Sickle Cell and the hopes for potential opportunities.
These efforts underscore our dedication to improve genomic research awareness and education, fostering a shared understanding of how genomics can empower individuals and communities.
Towards equitable genomic medicine
By forging strong partnerships, amplifying diverse perspectives, and raising awareness, the Diverse Data Initiative is paving the way for equitable genomic medicine. Together, we can ensure that everyone—regardless of their background—benefits from the latest advancements in genomics.
