About the IBHO BioResource
The IBHO BioResource which launched in July 2024, is focused on understanding health conditions that disproportionately affect people from Black communities in the UK.
The IBHO BioResource invites individuals of Black ethnic backgrounds to take part in vital research aimed at uncovering how these conditions develop and why they may impact Black communities differently.
Why is the IBHO BioResource needed?
Black communities are significantly underrepresented in genetic studies, which limits our understanding of how certain health conditions develop and affect these populations. Most existing research is based on European ancestry, meaning treatments and diagnostic tools may not work as effectively for people of African or Caribbean heritage.
We aim to develop a dedicated research resource that can enable crucial research studies that help us understand the health experiences of individuals from Black communities.
Increasing representation ensures more accurate data, better prevention strategies, and fair access to research and healthcare for everyone.
Come and join the 5,000 volunteers who have already consented, your participation will contribute to shaping future healthcare strategies and interventions tailored to meet the needs of Black individuals.
Join the IBHO BioResource today
Complete our short online form to register your interest and check available locations to provide a sample
Who can take part?
We are inviting people aged 16+ from Black ethnic backgrounds, such as Black African, Black Caribbean and Black British to participate, whether they have a health condition or not. We are also inviting people with a confirmed diagnosis of Sickle Cell or Thalassaemia to join, regardless of ethnic background.
Children aged 15 and under with a confirmed diagnosis of Sickle Cell can also join the IBHO BioResource. All other children are invited to join our children and young people's research programme via D-CYPHR.
What happens when I join?
If you decide to join, you will donate a blood or saliva sample and be asked to complete a health and lifestyle questionnaire.
We will also ask you to fill in a consent form that describes how your data and samples will be used and allows us to match you to specific research studies.
If you believe you are eligible and would like to take part, or have any questions, please email us: [email protected].
Where can I sign up?
We are recruiting volunteers nationwide at hospital sites and GP surgeries. See the map and get in touch with us via email us at [email protected] or contact your local site to find out where you can sign up.
Video resources
Our YouTube playlist covers various aspects of the IBHO BioResource and the importance of research
Frequently Asked Questions:
We are inviting people from Black communities, with and without health conditions, as well as those with a confirmed diagnosis of Sickle Cell or Thalassaemia, to join the IBHO BioResource.
We are inviting volunteers to join IBHO, both those who do and do not have a health condition. Health research needs can vary across communities, yet studies have rarely focused on the specific health needs and experiences of people from Black communities. This can be problematic as we may miss community-specific needs, or apply research findings that are less relevant to some communities.
For Black communities, this lack of focused research has resulted in inequitable health outcomes. By creating the IBHO BioResource we hope to help address this issue, so that in the future, research findings and medical advancements are considerate and relevant for Black communities.
Some health conditions such as Sickle Cell are more common in Black communities but can also occur in people who are not from a Black community and/or do not have African ancestry. It is important we capture the diverse experiences of people living with Sickle Cell, regardless of ethnic background.
By asking you to join the IBHO BioResource we hope to be able to understand health conditions such as Sickle Cell better and improve treatment and research in the future.
Anyone living in England, over the age of 16, from the following ethnic backgrounds: Black African, Black Caribbean, Black African-Caribbean, Black British, Black Welsh, Black Irish, Black Scottish, Dual or Mixed Black heritage, and/or Black ‘other’.
Patients with a confirmed diagnosis of Sickle Cell can also join the IBHO BioResource, regardless of ethnic background.
Our bodies are made up of millions of cells. Each cell contains DNA, which provides the cells with instructions on how to work. DNA also determines things like your hair and eye colour. Each piece of information is carried on a different section of DNA – these sections are called genes. The study of genes is called genetics.
Every second of every day your cells are using the instructions from your genes to keep your body working. The genes tell your cells which molecules to make – the central process to start all the proteins, antibodies, hormones and other things your body needs. This is why genes are so important to health research.
Every human has unique DNA (except for identical twins). Your unique DNA and genes will influence what keeps you healthy, but can also influence the likelihood of you developing health conditions. It is important for us to understand through research how genes can influence health in order to design prevention and treatments for conditions.
The National Institute for Health and Care Research (NIHR) BioResource is a panel of hundreds of thousands of volunteers, with and without health conditions, who wish to participate in health research. Volunteers joining the BioResource are asked to donate a small blood or saliva sample and give consent to be invited to participate in health-related research studies. Invitations are based on data gathered from samples and information volunteers have provided.
Information and samples that the BioResource holds may also be made available to researchers working in biomedical and healthcare research.
The National Genomic Research Library (NGRL) is a secure national database of de-identified genetic and health data from people in the UK, managed by Genomics England.
In 2024-2025 we collaborated with Genomics England on their Diverse Data Initiative. This means if participants joined during the collaboration they were asked if they would like to also join the National Genomics Research Library. If you would like to read about the Diverse Data initiative you can here.
The collaboration ended on the 30th September 2025, if you have any questions about this collaboration please get in touch [email protected]
The IBHO BioResource forms part of the National Institute for Health and Care Research (NIHR) BioResource Research Tissue Bank.
The IBHO BioResource is funded by the NIHR, led by Professor John Bradley (Chief Investigator) and Dr Nathalie Kingston (Director) .
Research such as this must be approved by a research ethics committee. The NIHR BioResource, including the IBHO BioResource initiative has been approved by Cambridge Central Research Ethics Committee (IRAS ID 313104. REC REF 22/EE/0230)
Keeping your information secure is our highest priority. There are a number of regulations and policies that our study complies with to ensure data is protected and that biological samples are stored correctly.
Useful links for more information about use of personal and biological data
If you provide the IBHO Study team with a blood or saliva sample, your biological sample is protected by the Human Tissue Act 2004. The Act regulates the removal, storage and use of human tissue and ensures all samples are collected appropriately.
Find out more about confidentiality and how we keep your data secure.
Data about you (e.g., personal details and health information) will be stored in secure electronic databases. Any information from genetic and other tests will be stored separately from your personal details. Only authorised members of the BioResource can access your personal details (for example, to invite you to take part in other research studies).
Information about you will not be used or shared for any purpose other than for research. We do not share any data with insurance companies or any government organisations. We would require a court order and would seek legal advice before making data available.
When you join, we will ask permission to securely access health andeducation. We request your consent to link your health records. Using these linkages, we can investigate how health experiences and treatment can affect your healthcare and other areas of your life, such as education and employment.
We will only request specific information from these records when needed and only to permitted staff. Best ethical and legal practice will be followed to ensure your information will be handled in confidence.
Access to personal details will only be available to necessary members of the NIHR BioResource and regulatory authorities.
We are regulated by the NHS Health Research Authority. The NIHR BioResource is compliant with the NHS Data Security & Protection Toolkit, which is used to ensure organisations handling patient data are doing so responsibly.
You are free to withdraw from the IBHO BioResource at any time, without giving a reason. If you would like to withdraw, simply contact the IBHO BioResource team by email or phone, or visit our withdrawals page:
Email: [email protected]
Telephone: 0800 090 22 33
There are no immediate benefits to taking part in the IBHO BioResource. However, some people welcome the opportunity to be involved in a new project and contributing to new knowledge that might lead to better future healthcare for individuals.
We will keep participants up to date with progress via a yearly newsletter.
The BioResource does not provide a report or feedback on any genetic or laboratory results obtained from your sample, as it is taken for research purposes only.
When you consent to joining IBHO you are also consenting to be contacted by NIHR BioResource with possible future research participation opportunities. If you match the research team’s criteria, you will get a letter with all the study information and what you would be required to do.
It is entirely your own choice whether to take part, you are under no obligation and your decision will not affect future invitations.
For more information please visit the BioResource website.
A £15 Amazon voucher will be emailed to you after we receive your consent form from. Your consent form is sent to us by the clinical team who enroll you in the NIHR BioResource.
It can take a few weeks to receive your paperwork, the voucher will be sent as quickly as is possible.
If you are concerned you have not received your voucher please email the IBHO team.
We will pay reasonable travel expenses if you are asked to join IBHO BioResource outside of your routine clinical appointments.
Please discuss this with the research team at your local Hospital who plan to take your consent.
Our Centres and Programmes
The NIHR BioResource is a network of Centres that recruit participants locally and lead research programmes.