As described in our information leaflet, linkage of information from CRANE with other databases helps give us more information about outcomes for cleft patients.
For example, since 2014, CRANE has been given permission to link with the educational information already collected and stored about your child by the Department for Education on their National Pupil Database. The National Pupil Database contains information about all pupils in schools and colleges in England.
Linking CRANE and this educational information means we receive some information about educational attainment at different key stages for each child on our database. To do this, we send the Department for Education some personal details of each child: name, postcode and date of birth so their educational records can be identified. We do not send them any information about any child’s cleft or other medical conditions, or the cleft care these children receive.
This linkage work allows us to share findings with the public on similarities and differences in educational outcomes according to children’s type of cleft, the presence of other medical problems, and other factors about their care. We do not use any information in our reports that could be used to identify individual children, their families, or their schools.
There is a lot of support and interest in this new way of using the information collected by CRANE. The Cleft Lip & Palate Association (CLAPA) – the only national charity dedicated to improving the lives of people affected by cleft lip and palate in the United Kingdom – endorses this work.
Toni Kitchingman, Interim Chief Executive Officer of CLAPA says:
“ At the Cleft Lip and Palate Association (CLAPA), we know that being born with a cleft can impact on many areas of someone’s life beyond medical and surgical treatment. The information the NHS provides to the CRANE database is incredibly useful, but by looking at this data in the wider context of a child’s life we’re able to see the bigger picture of what it really means to be born with a cleft. This includes all the hidden factors that may otherwise have been overlooked, such as the recent evidence linking cleft to educational achievement. It’s only once we’ve uncovered these hidden factors that we can work towards understanding what they really mean, and how organisations like CLAPA and the NHS may be able to help. This is why CLAPA fully endorses the linkage of datasets to improve our understanding of cleft lip and palate.”