About IBHO
This new research initiative is dedicated to studying health conditions that disproportionately affect people from Black communities in the UK. IBHO invites individuals from Black ethnic backgrounds to participate in research aimed at improving our understanding of how these conditions might develop and specifically affect those from Black communities.
Why is IBHO needed?
The UK lacks a dedicated research resource that can enable crucial studies to help us understand the health experiences of individuals from Black communities. The development of IBHO will allow this important work with a view to better understanding and improved prognosis of common and rare health conditions in these communities. Participation contributes to shaping future healthcare strategies and interventions tailored to meet the needs of Black individuals.
Who can take part?
We would like to understand how health conditions can specifically affect people from Black communities. We are inviting individuals with a UK address, aged 16 years and above and from Black ethnic backgrounds, such as Black African, Black Caribbean and Black British, to participate.
People living with a health condition, and those who are not, are invited to participate in the IBHO BioResource. We are also inviting people with a confirmed diagnosis of Sickle Cell or Thalassaemia to join, regardless of ethnic background.
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 e-mail us: ibho@bioresource.nihr.ac.uk
Join IBHO today
Get in touch to tell us you would like to take part or ask any questions
Genomics England
We are working on a Sickle Cell focused arm of the IBHO BioResource in collaboration with Genomics England. Sickle Cell patients are invited to also join Genomic England's National Genomic Research Library (NGRL) at the point they join the IBHO BioResource. Patients can choose not to join the NGRL and still join the IBHO BioResource. Find out more in our FAQs sections.
By partnering with us, Genomics England benefit from working with existing and established recruitment infrastructure and networks, as well as enhancing an exciting new initiative dedicated to improving health research for the UK Black communities.
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 who have and do not have health conditions. 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 do not identify as coming 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 with a UK address, over the age of 16, who self-defines their ethnicity as Black (Black African, Black Caribbean, Black African-Caribbean, Black British, Black Welsh, Black Irish, Black Scottish, Dual or Mixed Black heritage, and/or Black ‘other’.), or has a diagnosis of Sickle Cell can join.
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. We are inviting you to join the ‘Library’, to help us learn more about genes and health, so we can improve healthcare for everyone in the future.
You can choose not to join the ‘Library’ and still join the IBHO BioResource. If you choose to opt-in, the IBHO team may share your sample and data with Genomics England depending on the analysis that will be done (e.g., whole genome sequencing).
The BioResource will also share a copy of your signed consent form with Genomics England.
The IBHO BioResource forms part of the National Institute for Health and Care Research (NIHR) BioResource Research Tissue Bank.
The IBHO BioResource is a collaboration between the NIHR BioResource, King’s College London and Genomics England.
The IBHO BioResource is funded by the NIHR. Genomics England is funded by the Department of Health and Social Care.
The IBHO BioResource is a collaboration between the NIHR Maudsley BioResource Centre at King’s College London, led by Professor Gerome Breen and Dr Juliana Onwumere (IBHO project co-Principal Investigators), the NIHR BioResource, which is led by Professor John Bradley (Chief Investigator) and Dr Nathalie Kingston (Director), and Genomics England, led by Professor Matt Brown (Chief Scientific Officer) and Dr Sara Trompeter (Clinical lead for Sickle Cell, Diverse Data).
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 or Genomics England 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, education and social care records, to ensure accurate research. We request your consent to link your health and social care 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 and/or the National Genomic Research Library 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: ibho@bioresource.nihr.ac.uk
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.
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Our Centres and Programmes
The NIHR BioResource is a network of Centres that recruit participants locally and lead research programmes.