Cleft Lip and Palate
An initial awareness meeting for the Cleft Lip and Palate PSP for interested patients, families and clinicians was held in Birmingham on Saturday 11 June 2011. This was followed by the launch of a survey to collect people's unanswered questions about cleft lip and palate. Over 300 people took part, generating over 600 unanswered questions, which were then processed and checked.
The resulting long list of 71 questions went forward for the interim prioritisation exercise. A shortlist of 26 questions was taken to the final prioritisation workshop held in Birmingham on Saturday 20 October 2012. At the workshop, adults with cleft lip and/or palate, parents of children with a cleft and healthcare professionals agreed a prioritised list of 12 unanswered questions about cleft for research to address.
The steering group of the PSP included representatives from the Cleft Lip and Palate Association (CLAPA), the British Association of Plastic Reconstructive and Aesthetic Surgeons (BAPRAS) and the Craniofacial Society of Great Britain and Ireland.
Steering group member Nicky Kilpatrick, Paediatric Dentist, said: “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”.
The Cleft Lip and Palate Top 10 was published in October 2012.