Download the July 2021 CRANE Newsletter here!

This issue includes information on:

• The CRANE 2020 Local Action Plan – a tool for cleft teams to implement the recommendations from the CRANE 2020 Annual Report,

• the latest paper authored by Matt Fell, CRANE Team, and valued collaborators – on the relationship between maxillary growth and speech in children with UCLP at five years of age,

• guidance on the improved capture of syndromes and additional diagnoses,

• updates to the Database to collect ethnicity, and

• information about data collection milestones.

The Cleft Registry and Audit NEtwork (CRANE) Database has published its Summary of CRANE 2020 findings for patients and parents/carers on 1 April 2021.

Click on the image below to go to download your copy

The full report is available to download here.

If you have any queries about this report or this programme of work, please contact us.

Download the April 2021 CRANE Newsletter here!

This issue includes information on:

• The CRANE 2020 Annual Report: Summary of Findings for Patients and Parents/Carers,

• updates to the Database to collect ethnicity,

• guidance on the improved capture of syndromes and additional diagnoses, and

• information about data collection milestones.

Is it possible to accept consent via electronic means?​​​​​​​

The CRANE Project Team has been asked about the consent taking process during the COVID-19 pandemic, and whether it is possible to accept electronic signatures.

We can confirm that:

• The CRANE Database accepts informed consent – for data collection and linkage – provided to cleft teams via any suitable written or electronic means,
• so long as the method is in compliance with your own Hospital’s / Trust’s Information Governance’s policies.

For more information about CRANE consent – as per our leaflets – and the Information Commissioner’s Office (ICO) guidance on ‘What is valid consent?’ please visit the links below:

Information Leaflets and Parental Consent Forms

https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/consent/what-is-valid-consent/

​​​​​​​Is it possible to reduce the length of CRANE's current consent documentation?​​​​​​​

The CRANE Project Team has been asked about reducing the length of our information leaflets - links as above.

Although we understand that briefer documents might make the consent-taking process a bit easier, previous shorter versions did not meet the Information Governance requirements to take valid consent, according to the General Data Protection Regulation (GDPR).

Can we make recordings of the CRANE Database for training or other demonstrations?

We understand that this could be very useful. Unfortunately, making or sharing a recording of our database would be in breach of Information Governance regulations. This is because it shows patient identifiable information.

No one should be recording meetings or demonstrations involving the CRANE Database, or any other system that identifies patients.

• Therefore, we are happy to organise training or demos for new staff, as appropriate, as it would be a breach of data protection for members of cleft teams to make/use recordings of the CRANE Database for training (or any other) purposes.
• Recording of patient confidential data are in breach of the ‘purpose limitation’ GDPR principle, and a violation of the integrity and confidentiality of the database. If the breach of any of the 7 GDPR principles (as per the link below) were to happen, we would have to treat it as a GDPR incident. https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/principles/
• Your Hospital’s / Trust’s Data Protection Officer will confirm these statements, if you wish to consult further with them.

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For further information about the CRANE Database or to contact us with any queries, please get in touch by phone or email:

•   crane@rcseng.ac.uk
•   020 7869 6139

Download the February 2021 CRANE Newsletter here!

This issue includes information on:

• The CRANE 2020 Annual Report – published in December 2020,

• updates to documents used to seek consent – including Welsh versions,

• updates to the database – for improved capture of syndromes and Psychology data, and

• information about data collection milestones.

Psychology data completeness has been added to the live reported outcomes at five years of age summary table behind the log-in for the Database.

This table was updated in January 2021 to show the completeness of the outcome data required for the 2021 Annual Report.

For more information, please log-in to the Database and visit the Data Collection Milestones for 2021 resource page.

The Cleft Registry and Audit NEtwork (CRANE) Database has published its 2020 Annual Report on 18 December 2020.

This report presents results from the prospective audit of children born with cleft lip and/or cleft palate between 2000 and 2019, in England, Wales and Northern Ireland.

The Cleft Registry and Audit NEtwork (CRANE) is a national registry and clinical audit run by the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons of England (RCS).

If you have any queries about this report or this programme of work, please contact us.

For more information about the CRANE Database, please visit our FAQs for professionals and the public.

The Psychology outcomes data collection section in CRANE has been updated.

• This reflects changes requested by the Psychology CEN in 2019.
• Based on feedback from cleft teams on when and how families are screened; following publication of the December 2018 report (including Psychology outcome data for the 1st time).

What does this mean for Psychology data collection?

• CRANE continues to collect data items on: Dates of screening, 6 SDQ scores and TIM score.
• The single section in the database collecting 5 year Psychology outcomes has been separated into 3 sections. One of these sections is now available for completion from birth.
  • Please view Psychology Outcomes Data Entry Guide for further information.
• The CRANE Data Dictionary and associated ​​​​CRANE Data Collection Forms have been updated to reflect these changes.

Contact us if you have any questions about this, as well as if you have suggestions to improve the guide.

Managing CRANE records of children with additional diagnoses

If a child has Pierre Robin Sequence (PRS):

• Select ‘yes’ under ‘Pierre Robin Sequence present’ field in the database on the ‘Cleft Details’ tab of the database.
• If no other syndromes are present, please select the ‘no’ option under ‘Confirmed syndromic diagnosis present’ on the ‘Syndromes’ tab.

This allows us to analyse outcomes in children with PRS without additional syndromes. This is particularly important for analysing Speech outcomes.

If a child has micrognathia/micrognathism and no syndromic diagnosis, please select the ‘no’ option under ‘Confirmed syndromic diagnosis present’ on the ‘Syndromes’ tab.

If a child has developmental delay, which is not part of a confirmed syndrome, please select the ‘no’ option under ‘Confirmed syndromic diagnosis present’ on the ‘Syndromes’ tab of the database. If an audit assessment is not possible because of delayed development or the child is non-verbal, please select the 4th option – Clinically contraindicated – on the drop down menu under ‘reason outcome not collected’.

If a child has a diagnosed syndrome, either named or with an unknown name, please ensure this information is entered under the ‘Syndromes’ tab of the database.

Where possible, please assess Speech and record this in the CRANE Database for children with syndromes such as:

• Di George syndrome,
• Stickler syndrome and
• Van der Woude syndrome.

By submitting this data, the CRANE Database will – in time – collect data on enough children with these syndromes to report on their Speech outcomes at 5 years.

For further information about the CRANE Database or to contact us with any queries, please get in touch by phone or email:

•   crane@rcseng.ac.uk
•   020 7869 6139

We would like to provide explicit guidance to cleft teams providing data to CRANE on whether or not the following children should be included/excluded from being registered on the CRANE Database:

1.    Private care patients
2.    Children of families not based in England, Scotland, Wales and Northern Ireland

1. CRANE guidance on private care patients

One of the key functions of the CRANE Database is to serve as a registry for all babies born with a cleft, within NHS hospitals and private practices. Both should be registered in CRANE.

Specifically, the following children should be registered in the CRANE Database:

• Babies born in UK private practices, and receiving cleft care services either from NHS services or from private cleft care providers.
• Babies born in NHS hospitals and remaining under the care of NHS services. This includes children who also receive some private cleft care treatment, in addition to the NHS care treatment.

Registration of babies born in both NHS and private practices in England, Scotland, Wales and Northern Ireland improves our estimation of incidence of cleft and our ability to monitor the epidemiology of oro-nasal clefting in these countries.

Where these children – registered in CRANE – go on to receive care services from one of the 15 NHS centralised cleft teams (as listed in CRANE Database Annual Reports), at any stage of their care journey, this outcome data should also be recorded in the CRANE Database – with the appropriate consent.

2. CRANE guidance on families not based in England, Scotland, Wales and Northern Ireland

Patients who are not resident in England, Scotland, Wales and Northern Ireland should not be registered in the CRANE Database.

Specifically, the following children should not be registered in the CRANE Database, nor have outcome data collected in CRANE:

• Babies from parents not based in the UK, born with a cleft in a UK hospital who then returned to their home country. This is because CRANE is a registry for babies from families residing in England, Scotland, Wales and Northern Ireland.
• Babies born outside of the UK with a cleft and who travel to the UK to receive cleft care services, from either the NHS or private cleft care providers, then return to their home country after their cleft care. Recording of this information would distort the estimation of incidence of cleft and evaluation of cleft care services in England, Scotland, Wales and Northern Ireland.

For further information about the CRANE Database or to contact us with any queries, please get in touch by phone or email:

•   crane@rcseng.ac.uk
•   020 7869 6139

Updated 20 March 2023 to reflect Scotland joining CRANE.