£11 million cleft research study will have global impact

The largest ever research programme into cleft lip and palate will bring huge potential benefit to patients around the world, say scientists speaking at the project’s launch on Tuesday.

The University of Liverpool’s NIHR Medicines for Children Research Network (MCRN) Clinical Trials Unit will work in partnership with the programme’s leaders at the Universities of Manchester and Bristol. Other partners in the programme include Central Manchester University Hospitals NHS Foundation Trust and the University of the West of England.

Cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year, but little is known about its causes, with opinion divided on best treatments. As part of the new study researchers will run a programme of clinical studies and host a cleft gene bank and cohort study.

The £11 million, five-year programme – called The Cleft Collective – is the single biggest investment in cleft research anywhere in the world and will draw on expertise from across the UK. The Healing Foundation charity will be providing £5 million towards the project, with additional funding coming from university and NHS partners.

Professor Paula Williamson, Director of the MCRN Clinical Trials Unit, said: “Children and their families, together with health care professionals, need access to reliable cleft research evidence. At Liverpool we will be providing academic support and infrastructure to enable local, national and international researchers, to design and undertake high quality, rigorous studies. We are delighted to be collaborating in this exciting initiative.”

Professor Bill Shaw, from the University of Manchester, said: “Even today, we neither know the cause of cleft nor the best approaches to treatment. Here in Manchester we will be coordinating a nationwide programme of research in order to improve the treatments available and reduce the burden of care on children and their families. The benefits of our collaborative work will be felt by patients and their families worldwide.”

Acting Chief Executive of The Cleft Lip and Palate Association (CLAPA) Sue Carroll added: “We at CLAPA welcome this new and exciting research programme which, over the next five years, will provide huge insights into cleft lip and palate. We urge as many people as possible nationwide to get involved.”

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