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.
Claire Cunniffe, Chief Executive Officer of CLAPA says:
“The Cleft Lip and Palate Association (CLAPA) is a charity supporting people born with a cleft and their families in the UK. People born with a cleft can be impacted in many areas of their life beyond medical and surgical treatment and we aim to provide a range of support to as many people as we can.
We know the importance of partnership working and continue to ensure that connections and partnerships are made to ensure that outcomes remain the best they possibly can be for everyone affected by cleft in the UK. The health and education information reported on by the CRANE Database is extremely important and it is essential that it remains possible for this information to be linked to allow continued research and knowledge regarding health and educational outcomes for children and young people born with a cleft.
CRANE’s processing of children’s health and educational data allows the fulfilment of an essential public task and the linkage of the health and education data is essential to ensure that children and young people achieve their potential.“