CRANE

the Cleft Registry and Audit NEtwork (CRANE)

 

Overview of organisation

The Cleft Registry and Audit NEtwork (CRANE) Database collects information about all children born with cleft lip and/or cleft palate in England, Wales and Northern Ireland. This database was set up by the Department of Health in 2000.

Typically, children with a cleft lip and/or palate need a mixture of care, from birth to adulthood, from professionals from different disciplines. This is why it is important to record information on these children from birth or diagnosis, to inform their care.

The database is funded by the National Health Service through the Specialist Service Commissioners, who have responsibility for the delivery of care to children born with cleft lip and palate in England and Wales. An independent body, the Cleft Development Group, which represents patient representative groups, clinicians and commissioners, has the overall responsibility for running the database.

 

Aims of the organisation

The aims of the CRANE Database are:

1. To collect birth, demographic and epidemiological information on all children born in England, Wales and Northern Ireland with a cleft lip and/or palate; and
2. to collect information on the treatments of children with a cleft lip and/or palate and the outcome of these treatments.

Collection of this information means that the CRANE Database can address the following objectives:

1. Ensure there is an up-to-date register of all children with cleft lip and/or palate;
2. monitor the frequency and incidence of clefting in the population;
3. audit and report on the quality of care for patients with clefts, to promote high standards in clinical management;
4. seek and use linkage to other national databases for validation purposes, to enhance the data recorded in CRANE, to reduce data collection burden for cleft teams, and be able to more thoroughly report on the impact of cleft care on patients’ outcomes;
5. work with and receive advice from the Craniofacial Society Great Britain & Ireland (CFSGBI) to improve the delivery of cleft care in the UK;
6. work in partnership with Commissioning Groups to inform commissioning of cleft services; and
7. to support research and focused studies.

 

Examples of progress made or particular achievements

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.”

 

Opportunities to get involved

Participation in national audit

All NHS cleft services in England, Wales and Northern Ireland providing specialist support and clinical care to children born with cleft lip and/or palate and their families, from diagnosis to adulthood, participate in the CRANE Database.

NHS cleft services are centralised. So not all Hospitals / Trusts have a cleft service.

If a Hospital / Trust does not have a cleft service, any baby born there with a cleft will be referred to one of the cleft services below. They will be responsible for these cases' cleft care and the data entry for these cases.

Cleft Services – in England, Wales and Northern Ireland	Host Hospital(s)
Newcastle	Newcastle Hospitals NHS Foundation Trust
Leeds	Leeds Teaching Hospitals NHS Trust
Liverpool*	Liverpool Alder Hey Children’s Hospital
Manchester*	Royal Manchester Children’s Hospital
Trent	Nottingham University Hospitals NHS Foundation Trust
West Midlands	Birmingham Children’s Hospital
Cleft.Net.East	Cambridge University Hospitals NHS Foundation Trust
North Thames	Great Ormond Street Hospital (GOSH), jointly with Broomfield Hospital in Essex
The Spires	Salisbury District Hospital, jointly with John Radcliffe Hospital, Oxford
South Wales	Swansea Bay University Health Board
South West	University Hospitals Bristol NHS Foundation Trust
Evelina London	Guy’s and St Thomas’ NHS Foundation Trust
Northern Ireland	Royal Belfast Hospital for Sick Children

*The North West, Isle of Man and North Wales Cleft Lip and Palate Network

 

Authorised cleft team staff can request an account to view local data via the CRANE website.

 

Quality improvement

Cleft teams who want to create a local action plan to drive quality improvement can download the CRANE local action plan template. This template helps teams set out clear aims to implement the recommendations from the CRANE 2020 Annual Report.

 

Research

If you have any ideas for local or national research questions you would like to answer, contact the team on crane@rcseng.ac.uk with a brief outline proposal - to ascertain whether or not it would be feasible to answer the research question with CRANE’s current dataset(s). This will be shared with the relevant Clinical Excellence Network (CEN) and Cleft Development Group for their review and approval.

Your research protocol will require CEN and CDG support.

 

Contact

The Cleft Registry and Audit Network, Clinical Effectiveness Unit (CEU), The Royal College of Surgeons of England, 38-43 Lincoln’s Inn Fields, London. WC2A 3PE Email: crane@rcseng.ac.uk Tel: 020 7869 6139 Twitter: @CRANE_News