Severe childhood illnesses including cancer, life-threatening diseases and mental health conditions are to be the focus of a new multi-million pound research partnership in Leeds.
The Children's Health Outcomes Research at Leeds (CHORAL) Research Centre is co-led by the University of Leeds and Leeds Children's Hospital.
The five-year project has received £2.6 million in initial funding from Leeds Hospitals Charity; £2.4 million from the University, and £500,000 from Leeds Teaching Hospitals NHS Trust.
There will be three multi-disciplinary groups set up to tackle key areas where research can improve outcomes for young patients, in childhood cancer, children's mental health and life-threatening illnesses.
This collaborative research will bring together clinicians, scientists and academics and we hope that this multi-faceted approach will improve the care we can provide.
Leeds has already made significant contributions to improved clinical outcomes from childhood illness in numerous areas including children's cancer, cystic fibrosis, diabetes and neuromuscular disorders.
There are currently more than 1,000 children involved in over 100 active clinical trials at the NIHR Leeds Clinical Research Facility, and CHORAL will enable more children to contribute to and benefit from clinical trials.
Specialist treatment
Six-year-old Dulcie, from Telford in Shropshire, was diagnosed with stage 4 neuroblastoma in December 2021. Neuroblastoma is a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis.
The family were referred to Leeds Children's Hospital for specialist treatment, where Dulcie was the first child in the UK to participate in a pioneering new drug trial.
Debbie O'Kelly, Dulcie's mum said the research trials Dulcie is involved in have given her family hope. She said: "We're incredibly grateful that Dulcie has been given the opportunity to take part in ground-breaking research trials as part of her treatment. As a family, this also gives us hope for the future that there's a chance for Dulcie to get better and lead a full, happy life, which is what every mother wants for their child."
Cancer treatment is scary for any child, but Dulcie loves the staff at the hospital who help her, and she understands why her treatment is important.
Dulcie said: "I don't really like the treatment, but I love seeing the doctors and nurses at the hospital and I know it's helping me. When my mummy told me I was going to be part of the trial I said, "I'm helping other children with cancer aren't I, mummy?"
Transformative research
Adam Glaser, Professor of Paediatric Oncology in the University of Leeds' School of Medicine, and Honorary Consultant at Leeds Children's Hospital has been appointed Director of the CHORAL Research Centre.
Professor Glaser will oversee the research alongside Professor Richard Feltbower and Dr Simon Pini in the School of Medicine, and Dr Carole Burnett, Visiting Research Fellow at the Leeds Institute of Medical Research (LIMR).
Professor Glaser said: "I am incredibly excited to launch the CHORAL Research programme here in Leeds. This is a fantastic opportunity to establish a world-leading research centre in the city, led by Leeds Children's Hospital. Through a clear focus on child health, the CHORAL team will deliver truly transformative research to improve the lives of future generations in Yorkshire, and beyond.
"This collaborative research will bring together clinicians, scientists and academics and we hope that this multi-faceted approach will improve the care we can provide and help us tailor treatment to prevent illness and improve outcomes for young patients like Dulcie."
Health inequalities
Through a data-driven approach, CHORAL aims to tackle the health inequalities children and their families can face. As the impact of these illnesses mean there are barriers to children's learning and development, and their life outcomes.
There will be three multi-disciplinary groups set up to tackle key areas where research can improve outcomes for young patients, including childhood cancer, children's mental health and life-threatening illnesses.
Esther Wakeman, Chief Executive of Leeds Hospitals Charity, said: "We're delighted that donations have enabled us to support this worthwhile research project that will unlock new opportunities and benefit so many young people and their families. As a charity, we're committed to reducing health inequalities in Leeds and investing in the treatment of rare diseases, both of which will addressed through this ground-breaking research centre at Leeds Children's Hospital."
It is expected that the first patients will be invited to take part in trials at the new CHORAL Research Centre from late 2023.