Our priorities

Aims
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:
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 General Data Protection Regulation (GDPR) and in line with Department of Health guidelines. More information on this can be found by visiting our Privacy Policy page.

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 General Data Protection Regulation (GDPR) and in line with Department of Health guidelines. More information on this can be found by visiting our Privacy Policy page.

CRANE Database Outputs & Information

  • Annual Reports
  • Peer Reviewed Publications
  • Presentation(s) at national conferences and other local meetings of relevant audiences (e.g. public / patients, commissioners, clinicians).
  • Summary Reports – on request by cleft teams.
  • Provision of metrics (every quarter) for the Cleft Lip and Palate Quality Dashboard commissioned by the NHS Commissioning Board (now NHS England) – reported by Methods.
  • Data linkage.
  • Collaborations. For example, as a response to the CRANE 2012 Annual Report highlighting the problem of late diagnosis of Cleft Palate, 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 neonates.
  • Consultations to inform improvement or expansion of CRANE data collection. For example, CRANE[1] has recently completed a feasibility study of national Patient & parent/carer Reported Experience Measures (PREM) data collection.

For more information CRANE’s activities please review our “Future directions” chapter in our most recent Annual Report.

[1] In collaboration with the Cleft Psychology Clinical Excellence Network (CEN), upon request by the Craniofacial Society of Great Britain and Ireland (CFSGBI) Council and the Cleft Development Group (CDG).