The Cleft Registry and Audit Network (CRANE) Database collects information about all children born with cleft lip and cleft palate in England, Scotland, 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.

This leaflet explains how and why we collect this data, and how the information is handled:

CRANE Database Information Leaflet – August 2018 – 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 – August 2018 – 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 the Reports Section of our website.

The national data opt-out service allows patients to opt-out of their confidential patient information being used for purposes other than their immediate clinical care. All NHS organisations must comply with the national data opt-out policy.

Some of the data collected by CRANE is done so with Section 251 approval, which allows confidential patient information to be used for audit or medical research when it is not possible to use anonymised information and when seeking consent is not practical. This data relates to the registry function of CRANE.

Other data is collected only with patients’ consent. This data relates to the audit  function of CRANE.

More information about the above data items is available in the CRANE Data Dictionary.

However, if a parent chooses to opt-out of their child’s confidential patient information being used for purposes other than their immediate clinical care, none of the child’s data should be recorded in CRANE – this includes both registry and audit data.

Our guidance for professionals on this subject is designed to ensure cleft services comply with the national data opt-out.

More information about the national data opt-out, including how to set your own choices, is available on the NHS website.

If you have any further questions about the national data opt-out, specifically with regard to the CRANE, please contact us.

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, the CRANE the 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.

.

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.“

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 protected] or 020 7869 6610.

If you have any other questions about the CRANE Database that are not answered by our information leaflets, or reports, please contact us.

You could also talk to a member of your local cleft team; or contact the Cleft Lip and Palate Association (CLAPA) directly on 020 7833 4883 or by email at [email protected].