Improving Black Health Outcomes, a new research project at UCLH

A new research project aims to improve understanding of the unique impact of health conditions on UK Black communities. 

The project aims to recruit Black people to a special theme called Improving Black Health Outcomes within the National Institute for Health and Care Research (NIHR) BioResource. 

NIHR BioResource is a panel of more than 300,000 volunteers across the UK, some with health conditions and some without, who wish to participate in health research. 

Participants are asked to donate a small blood or saliva sample for genetic analysis, complete a health and lifestyle survey, and give consent for access to their anonymised NHS data. They can also agree to be invited to take part in health research studies which may be relevant to them. 

Research teams then can apply for permission to access the data to explore the relationship between genetics, the environment, health and disease as part of Research Ethics Committee approved studies. 

The IBHO BioResource is open to anyone who identifies as Black, as well as anyone with sickle cell disorder or thalassaemia, whatever their ethnicity. Find more about participating. 

“This new theme is an important step in redressing the inequity of involvement of Black people in genetic research. Black people are very underrepresented in bioresources in general – meaning research findings may be less applicable to them,” says UCLH consultant haematologist Sara Trompeter who is leading UCLH’s involvement. 

 “In addition, there is more genetic variation between people from Black populations, meaning that the lack of representation is even more inequitable.” 

She added: “There is growing interest in the scientific community in exploring genetics to explain variability in disease presentation, response and outcomes. Ensuring we have good representation of the UK population in these genetic libraries will be crucial in ensuring that people of all backgrounds can benefit from these scientific advances. We look forward to engaging with our patients, relatives, friends and staff across the organisation.” 

Participants will: 

• Be contributing to new knowledge that might lead to better healthcare for individuals in the future 

• Receive a yearly newsletter with progress updates on the IBHO BioResource 

• Be paid reasonable travel expenses if travel is required outside of routine clinical appointments 

• Receive a £15 Amazon voucher as a thank you for taking part. 

The IBHO BioResource is led by the NIHR BioResource in collaboration with Genomics England, Diverse Data. UCLH will be working with other hospitals to recruit to the IBHO BioResource, so that as many people as possible have the chance to participate.