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The Cleft Registry and Audit NEtwork

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 – including information about the surgical treatments your child has had, and how your child is 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.
 

Where can I find out more about why CRANE collects this information?
Our information leaflets will tell you why we collect this data and how the information is handled:

CRANE Database Information Leaflet - May 2016 - English
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 - Welsh
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RANE Database Information Leaflet - April 2013 - Polish
CRANE Database Information Leaflet - April 2013 - Urdu

How has CRANE data been used to improve children's care so far?
CRANE is committed to helping professionals provide the best evidence-based cleft care through the information we make available in our reports.

One of our recent yearly reports showed that over a quarter of babies with cleft palate had their condition missed at birth. National standards state that clefts should be diagnosed within 24 hours of birth to enable immediate referral to a specialist hospital. The report 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 — have drafted and recently published a best practice guide to help healthcare professionals identify cleft palate in neonates..

This guide is NICE accredited provides recommendations to ensure early detection of a cleft palate, and improve and standardise routine postnatal examination of the palate. A parent/carer guide is also available.
 

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. CRANE has recently 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 from the Department for Education 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 your child’s cleft or other medical conditions or the care your child receives for their cleft.

This linkage work will allow us to share findings with you 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 will not use any information in our reports that could be used to identify you or your child or their school.

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 UK-wide voluntary organisation including parents and patients with the specific aim of helping those with, and affected by, cleft lip and palate – endorses this work. Rosanna Preston, Chief Executive of CLAPA says:

"The key to providing the best cleft care is evidence based medicine. The CRANE database is a valuable source of evidence on the incidence of cleft and on the outcomes of treatment. When CRANE is linked to other databases it increases the value of the data because it provides information about the impact of clefts across different aspects of people's lives.

This means the data can be used to understand how having a cleft can affect children’s educational achievement; which has been highlighted as an important area of research by patients, carers and clinicians. In fact, understanding the impact of clefts on non-health outcomes like educational achievement was voted to be the second of the 'Top 12' priorities for research in cleft lip and palate with the James Lind Alliance (a priority setting partnership of patients, carers and clinicians).

CLAPA endorses the linkage of data across different databases 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 crane@rcseng.ac.uk 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 crane@rcseng.ac.uk;

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 info@clapa.com.

 

CRANE Database Information Leaflet_May 2016_English v1
PDF
CRANE Database Data Linkage Leaflet_May 2016_English v1
PDF
CRANE Database Patient Information Leaflet_April 2013_Welsh
PDF
CRANE Database Information Leaflet_April 2013_Polish
PDF
CRANE Database Information Leaflet_April 2013_Urdu
PDF