The Improving Black Health Outcomes (IBHO) BioResource – a collaborative research programme between the NIHR BioResource, King’s College London, and Genomics England – is commencing the recruitment of paediatric volunteers who are diagnosed with sickle cell. Launched in summer 2024, the IBHO BioResource is dedicated to improving our understanding of key health conditions that affect people from Black communities in England. Our aim is to facilitate research across a range of conditions such as mental health, sickle cell, diabetes, cardiovascular disease, and kidney disease.
There is a special focus on recruiting sickle cell patients, as it is a condition that affects Black communities far greater than other ethnicities and has historically been under-researched. We are working with Genomics England to invite sickle cell patients regardless of ethnic background to join the IBHO BioResource and have now opened recruitment up to younger patients. This means that children aged 0-15, living in England, with a confirmed diagnosis of sickle cell can join the IBHO BioResource with parent/guardian consent. Children who do not have sickle cell can also participate in health research by joining the DNA, Children + Young People’s Health Resource (D-CYPHR).
Currently, paediatric recruitment into the IBHO BioResource is open via:
- Barts Health NHS Trust
- Cambridge University Hospitals
- King's College Hospital NHS Trust
- Lewisham & Greenwich NHS Trust
- Nottingham University Hospitals NHS Trust
- University College London Hospitals NHS Trust
- Whittington NHS Trust
Dr Sara Trompeter, Consultant Haematologist and Paediatric Haematologist at University College London NHS Foundation Trust said:
"Understanding the biology and genetics of sickle cell disorder is a crucial step to better treatment and outcomes.
"With only two treatments, hydroxyurea and blood transfusion, to prevent complications in sickle cell disorder, we are really behind other health conditions.
"IBHO is key to improving our understanding and paving the way for new treatments and the inclusion of children in this critical programme is a great step forward."
Why paediatric research participation matters?
Paediatric participation in health research is essential to advancing our understanding of conditions, in particular to gain insight into the early causes of them and how they manifest as the child grows up. Most research is focused on adult populations, however the majority of health conditions, including inherited conditions like sickle cell, begin in childhood. Therefore, by involving young people in research, we can help develop more targeted, effective treatments for children – and, by extension, for the adults they become.
Find out more
For more information please visit the IBHO webpage. If you have any questions, or are a researcher interested in the IBHO BioResource, then please email us: 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 blood sample