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Cleft Lip and Palate
A JLA Priority Setting Partnership

The Cleft Lip and Palate Priority Setting Partnership has been established to identify the unanswered questions about the ‘management’ of individuals with cleft lip and/or palate from patient, carerand clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important.

The objectives of the Partnership are to:

• work with patients and clinicians to identify uncertainties about clefting (including diagnosis, aetiology and prognosis).
• to agree by consensus a prioritised list of those uncertainties, for research
• to publicise the results of the process
• to take the results to research commissioning bodies to be considered for funding

The Partnership's Steering Group includes representatives from the Cleft Lip and Palate Association (CLAPA), the British Association of Plastic Reconstructive and Aesthetic Surgeons (BAPRAS), the Craniofacial Society of Great Britain and Ireland, and the University of Bristol. The Steering Group is being chaired by Katherine Cowan of the JLA.

Professor Nicky Kilpatrick, Paediatric Dentist at the University of Bristol, said of the initiative: “The Cleft Priority Setting Partnership is not only important for establishing the research priorities for us in this country but also a great opportunity to engage with patients and their families in a really meaningful manner, which will hopefully pave the way for a closer working relationship in the future”. 

An initial awareness meeting for interested patients, families and clinicians was held in Birmingham on Saturday 11th June. Details of that meeting, including presentations, can be found by clicking here.

The Partnership's survey has now closed. Responses are being analysed, and further details will be posted here when available.

To watch Rona Slator (Clinical Director, West Midlands Cleft Centre) talk about the survey and explain the importance of addressing uncertainty in cleft lip and palate, at the CLAPA Conference 2011, click here.

Once the survey data has been checked and analysed, an interim priority setting exercise will begin. Details will follow in due course.

For further information please contact katherine@katherinecowan.net.