Information for Patients and Parents/Carers
What is the CRANE Database?
The CRANE database collects information about all children born with cleft lip and cleft palate in England, Wales and Northern Ireland. The database was set up by the Department of Health in 2000.
CRANE collects information on these children at birth or at diagnosis, and into childhood. This includes information about the surgical treatments children have had, and how they are getting on in terms of their speech, hearing, growth, dental health and overall health. You can read a bit more about this in the sections below.
Parents and carers are asked for their full and informed consent at all stages and can withdraw their child from the database at any time. No identifiable information is included in reports.
Why does CRANE collect this information?
This leaflet explains how and why we collect this data, and how the information is handled:
CRANE Database Information Leaflet - May 2016 - English
This leaflet explains how we collect information from other databases and records and how we use this to improve our reports:
CRANE Database Data Linkage Leaflet - May 2016 - English
These information leaflets should help reassure you that we do not use any information in our reports that could be used to identify you or your child. Copies of our reports can be found by visiting our publications page.You can also find below Welsh, Polish and Urdu translations of our previous information leaflet - updated versions of the 2016 leaflets will be made available when completed:CRANE Database Information Leaflet - April 2013 - WelshCRANE Database Information Leaflet - April 2013 - PolishCRANE Database Information Leaflet - April 2013 - Urdu
How has CRANE data been used to improve children's care?
CRANE is committed to helping professionals provide the best evidence-based cleft care through the information we make available in our reports.
National standards state that clefts should be diagnosed within 24 hours of birth to enable immediate referral to a specialist hospital. However, CRANE reports since 2012 show that over a quarter of babies with cleft palate had their condition missed at birth. We warned that early diagnosis is vital to avoid distress for families as babies are left unable to feed and gain weight. The report called for national and local guidelines to be reviewed to reduce the risk of missed diagnosis of cleft palate.
As a response to our work, the Royal College of Paediatrics and Child Health (RCPCH) — in collaboration with key partners including the CRANE Database team — drafted and published a best practice guide to help healthcare professionals identify cleft palate in newborns in 2015.
This NICE accredited guide provides recommendations to ensure early detection of a cleft palate, and to improve and standardise the way the palate is routinely examined at birth. A parent/carer guide is also available.
The RCPCH also launched an eLearning module in 2017 entitled Cleft Palate: Examination in the Newborn. This training module to reduce delays in detection of cleft palates, aims to ensure that best practice guidance for the assessment of the palate in newborns is followed consistently.
How does CRANE plan to continue to influence children's care?
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.
David Stokes, Chief Executive of CLAPA says:
"The ability to link medical information with data about other, non-medical, parts of life, such as education, is a hugely important part of understanding the true impact of cleft. It is only by looking at these different factors together on a large scale that we can find the hidden effects that being born with a cleft can have, and then use this evidence to find ways of addressing the issues identified. The CRANE database is an extremely valuable resource in enabling researchers to identify these hidden factors, such as the recent evidence around educational achievement. Therefore, the Cleft Lip and Palate Association (CLAPA) fully endorses the linkage of datasets to increase our understanding of cleft lip and palate."
Does my child have to take part in the linkage to their educational information?
We will only link records where parents have already given permission for their child to take part in the CRANE Database. However, you may choose to opt out of the linkage to their educational information specifically. If you would prefer us not to include the records of your child in this analysis please contact us on email@example.com or 020 7869 6610.
How can I find out more?
If you have any other questions about the database that are not answered by our information leaflets (above), you can get more information by:
Talking to a member of your local cleft team;
contacting us directly on 020 7869 6610 or by email at firstname.lastname@example.org;
looking at the CRANE Annual Reports – available on the Publications page; and
contacting the Cleft Lip and Palate Association (CLAPA) directly on 020 7833 4883 or by email at email@example.com.