The Improving Black Health Outcomes (IBHO) BioResource, jointly led by the NIHR BioResource, King’s College London, and Genomics England, is dedicated to studying health conditions in people from Black communities in the UK. We are inviting individuals from Black communities to participate in research specifically aimed at improving understanding of how these communities develop and experience health conditions.
Our aim is to facilitate research across a range of areas:
- Sickle Cell
- Mental health
- Diabetes
- Cardiovascular disease
- Kidney disease
- Environment and lifestyle
Why have we launched?
Historically, there has been an under-recruitment of Black people in health research, meaning much of what we know about many health conditions is usually based on white populations. Representation is crucial, as research findings may not always be applicable to groups outside of those included in studies, meaning that the development of new assessment tools, treatments and services might not necessarily
benefit everyone. The IBHO BioResource aims to address this gap and improve Black health outcomes by including more Black people in health research.
Principal Investigator for the IBHO BioResource, Dr. Juliana Onwumere, said:
"I am delighted that King’s College London are part of this innovative and collective effort with our partners, who have come together to improve our understanding of health conditions and their impacts on people from Black communities in the UK.
"This is long overdue, but so very much welcomed."
Who can take part?
We are currently inviting individuals aged 16 and over, living in England and from Black ethnic backgrounds to join, with or without a health condition.
As we have a particular initial focus on Sickle Cell recruitment, patients with a confirmed Sickle Cell diagnosis are also invited to join (via their clinician), regardless of ethnicity. The IBHO BioResource is also working with some clinicians to invite paediatric (under 16) Sickle Cell patients to take part in the IBHO BioResource, with parent/guardian consent.
When a person signs up to the IBHO BioResource, they will be asked to provide a blood or saliva sample, complete a health and lifestyle questionnaire, and fill in a consent form which describes how their data and samples will be used and allows us to match them to specific research studies.
Sickle Cell focus
Sickle Cell is more prevalent among Black populations. According to the Sickle Cell Society, the genetic trait for Sickle Cell is found in 1 in 4 West Africans and 1 in 10 African Caribbeans and is significantly less common in white Europeans. It is also a condition that is under-researched, meaning current treatment options are limited.
The initial focus of clinical recruitment for IBHO BioResource is on Sickle Cell patients, and we are working with Genomics England with the aim of building a world-leading Sickle Cell genomics research resource. Genomics England are supporting the recruitment of Sickle Cell patients from across the UK via participating clinics, with patients invited to join the IBHO BioResource and given the option to join the National Genomic Research Library (NGRL) - one of the richest genomic datasets in the world for both rare disease and cancer research. Patients have the option to decline joining the NGRL but still sign up to the IBHO BioResource.
September is Sickle Cell Awareness Month and as we announce the launch of the IBHO BioResource, we are proud to have worked alongside the Sickle Cell Society (SCS) to help raise awareness of the programme and the need for more research into Sickle Cell.
Join IBHO today
Get in touch to tell us you would like to take part or ask any questions
Recruiting our first IBHO BioResource volunteers
Volunteer recruitment is underway at clinics across the country, and we spoke with one of the first, Des, after he joined via our BioResource Centre in Leeds:
Des also added:
"This could improve the quality of life for individuals and help reduce health inequalities.
In the long run, it means healthier lives, more awareness about the disease, and better medical research."
Another person to sign up is Stephanie, who joined via the Whittington Hospital.
Discussing her motivations to join, Stephanie told us:
"It couldn’t have been easier to join. I chose to because there’s a lack of awareness when it comes to sickle cell and it’s not given the focus it deserves considering the number of people living with it.
"I want to help change that, which can only happen through research. Improving health outcomes for Black people is also important to me, given we’re disproportionately affected by multiple conditions.
"If I can play some small part in helping to change that it would mean a lot to me."
We are incredibly grateful to Des, Stephanie and all IBHO BioResource volunteers so far, and the thousands we hope will join in the months and years to come.
How can you get involved?
If you would like to take part, have any questions, or are a researcher interested in the IBHO BioResource, then please email us: ibho@bioresource.nihr.ac.uk. If you are a Sickle Cell patient, then please contact us or speak to your clinician about taking part to see whether your clinic is currently participating in the IBHO BioResource.