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 and adults 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:
3. Ensure there is an up-to-date register of all children with cleft lip and/or palate;
4. monitor the frequency and incidence of clefting in the population;
5. audit and report on the quality of care for patients with clefts, to promote high standards in clinical management;
6. 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;
7. work with and receive advice from the Craniofacial Society Great Britain & Ireland (CFSGBI) to improve the delivery of cleft care in the UK;
8. work in partnership with Specialised Commissioning Groups (SCGs) to inform commissioning of cleft services; and
9. to support research and focused studies.
How CRANE data is collected
The staff in local cleft services collect the information. They then record the information on the CRANE Database; with secure access appropriate for collection and processing of confidential and identifiable patient data. The system is password-protected and entirely computer-based; and the CRANE Database project team, based at the Royal College of Surgeons in London, do not receive or hold any paper records.
How CRANE data is stored
This is stored on a secure online computer system developed and hosted by Crown Informatics Limited, for the CRANE Project Team based at the Royal College of Surgeons (RCS) in London. This data is only accessible to a small number of select Crown Informatics and CRANE Database staff directly involved in the project. CRANE staff involved in this project hold contracts with the RCS.
The data collected in the CRANE Database system is transferred from the secure online system to the CRANE Project for storage and analysis. This data is stored electronically on a secure computer housed at RCS known as the Hospital Episode Statistics (HES) server system – a part of the RCS Clinical Effectiveness Unit’s network. This HES server is protected by a firewall and intruder detection equipment that guards the server against access from non-authorised people outside of the project.
All patient data held at the RCS is done so in accordance with the Data Protection Act and in line with Department of Health guidelines.
Data from other sources
With informed consent provided by parents/patients, the CRANE Database project team carry out ‘Data Linkage’ to follow children’s health and education throughout their cleft care – by linking to their official records; those held by the health and the education systems. An example of official health records that CRANE routinely links to is Hospital Episode Statistics (HES) Data; which allows us to have more information on these children’s hospital visits and the care they received.
Data linkage gives us further information about the treatments that children with a cleft receive, as well as the outcomes of these treatments. Please read more about data linkage in our CRANE Database Data Linkage Leaflet.
All this linked patient data held at the RCS is done so on a secure server; in accordance with the Data Protection Act and in line with Department of Health guidelines.
CRANE Database Outputs & Information