Importantly, these volunteers have joined the wider NIHR BioResource, a diverse group of over 340,000 volunteers from various ethnic backgrounds. This extensive panel, their samples and their data can be utilised in research looking at numerous health and disease areas, including studies not specifically focused on Black health. This ensures more research studies reflect the diversity of the population, ultimately benefiting Black communities through more inclusive research outcomes.
A huge thank you goes to every volunteer who has signed up and contributed to building the IBHO BioResource, a collaborative research initiative led by the NIHR BioResource with Genomics England and with significant contributions from King’s College London.
Dr Nathalie Kingston, Director of the NIHR BioResource, comments:
"Having more than 2,500 people consented to the IBHO BioResource in under a year since we began recruiting is testament to the need to engage with all communities to benefit all patients.
I am grateful for the hard work of everyone involved, from our network of colleagues at clinics across the country, to the central coordinating team and of course the volunteers themselves.
"We deeply appreciate the generosity of these volunteers in agreeing to participate in health research and their contribution to the positive transformation of healthcare outcomes for Black communities, which we are confident the IBHO BioResource will achieve."
Through our partnership with Genomics England and the Diverse Data initiative, of which the IBHO BioResource is one component, there has been an early focus on recruiting Sickle Cell patients, as it is a condition predominantly impacting people from Black ethnic background.
More than half the consented volunteers live with Sickle Cell. When consenting to IBHO, volunteers are also invited to join the National Genomic Research Library (NGRL), a secure national database managed by Genomics England that enables approved researchers to access de-identified genomic data, health data and samples.
Professor Matt Brown, Chief Scientific Officer of Genomics England, said:
"We’d like to thank everyone who has signed up to the IBHO BioResource and the National Genomic Research Library.
"Their decision will provide much-needed opportunities to improve health research in UK Black communities.
"This work will help us to build a world-class genomic dataset we hope will lead to a better understanding of sickle cell disease, the development of new treatments, and ultimately encourage better outcomes for those living with the condition.
"It’s important that people from all backgrounds can benefit equally from health research and the advances we’re seeing within genomic medicine."
As reported previously, research applications to put volunteer data and samples to use in studying Sickle Cell are already being received. Further updates will be shared soon.
Beyond Sickle Cell, the IBHO BioResource will be expanding its research areas in the coming months, looking at areas such as Mental Health, Diabetes, cardiovascular disease, and kidney disease.
National network and community outreach
More than 50 hospital sites at NHS Trusts across England are participating in IBHO BioResource recruitment and the first GP surgeries have recently opened. Combined with an ever- increasing portfolio of community partnerships and media coverage, the IBHO BioResource and an understanding of its potential is reaching new audiences every day.
Notable examples include:
- featuring on several local BBC Radio shows coverage on the BBC website featuring Ardel, an IBHO BioResource volunteer in Southampton (watch Ardel’s interview on YouTube)
- an IBHO BioResource residency at a 12-week Black Health Clinic recently launched in North London by Go Africa and Islington Council
- a new partnership with BHA for Equality, a charity in Greater Manchester, to raise awareness of the programme and invite the local population to take part
- activities and events across the country for World Sickle Cell Day on June 19th, including a talk at an event at Royal Papworth Hospital in Cambridge
Find out more
Check out the IBHO BioResource YouTube playlist for more information on taking part and why it’s important.
Find out more about the IBHO BioResource including how to participate and how to partner with the BioResource if you are conducting research. You can also contact us via ibho@bioresource.nihr.ac.uk
Join the IBHO BioResource today
Complete our short online form to register your interest and check available locations to provide a sample
