Bristol-based research programme wins national excellence award
The Cleft Collective, a Bristol-based cleft lip and palate research programme, has been awarded the PIER Prize in recognition of its excellent patient engagement and significant contributions to the National Institute of Health Research (NIHR).
The PIER (Paediatric Involvement and Engagement in Research) prize, is awarded annually by the Royal College of Paediatrics and Child’s Health (RCPCH) and the NIHR to paediatricians and multidisciplinary teams who make outstanding contributions to involve paediatric patients and their families in the development and delivery of research. This year, 12 applications were received from across the country.
Cleft lip and/or palate affects approximately 1 in 700 births globally. The Cleft Collective research programme, which started in 2012, is an ongoing study. It aims to answer the three questions most commonly asked by parents whose child has been born with a cleft lip and/or palate: ‘what caused this?’, ‘what are the best treatments?’ and, ‘will it affect my child’s life long-term?’
Funded by The Scar Free Foundation, over 3,000 babies and young children born with cleft lip and/or palate and over 6,000 of their parents and siblings have been recruited to date, from clinical services across all 16 UK regional cleft centres. Biological samples have been collected with information on early environmental and developmental factors, together with details of surgery and outcomes in speech and psychology.
The research by the Cleft Collective is based on work undertaken in Bristol over many years. It started in 1986, when cleft services in the UK were re-organised following a report from the Clinical Standard Advisory Group to the Government. The report recommended the centralisation of cleft services from 57 centres to 11 managed clinical networks. The increased number of patients being seen in the new networks presented the opportunity to develop a novel research strategy.
From the outset, the Cleft Collective, working closely with CLAPA – the Cleft Lip and Palate Association, has been determined to involve people personally affected by cleft. Yvonne Wren, Chief Investigator of The Cleft Collective said:
“The cleft patient community is a very strong group. Cleft can affect your whole life and so there is a strong sense of belonging within the community, which is strengthened by the work of CLAPA. It was therefore essential that patients should be involved with the study. Any research we do must have an impact for the patients themselves and their families – it’s what matters to them that’s most important for us to focus on.
“It has been a great honour to be awarded this prize. Our work with the cleft community is a team effort, involving all those involved in the Cleft Collective, as well as CLAPA and the members of our Patient Consultation Group. There is a lot of great Patient and Public Involvement (PPI) work happening around the country, so to be recognised means a lot. PPI with children and families is particularly difficult, as they don’t always have time on their hands and hearing the child's voice, in particular, can be hard. It’s great to get recognition for the work we are trying to do and hope to do moving forward.
“We are extremely grateful to The Scar Free Foundation for funding this work. Without them it would not have been possible. We have also benefited greatly from support from the NIHR as we negotiated the process of setting up a multicentre study and ensuring all approvals and processes were in place to start. The NIHR was key in helping us navigate the red tape and work with other areas to get them involved.”
Kerry Humphries, Project Manager for the Cleft Collective added:
“Winning this prize totally endorses everything we’ve done for the last seven years. To win it now, based on all the work we’ve done, shows we’ve got it right and are moving forward in the right direction.
“On our social media, we get a lot of positive feedback from all the families we work with across the UK. They understand how important this study is and they’ve been great at spreading the word and getting other families involved. Without them, the NHS Cleft teams and the support of the NIHR, we wouldn't be where we are now.”
Read Ana Hobbs' story about her experience as a member of the Patient Consultation Group and Advisory Board for the study.
