The CRANE Newsletter Issue 2022 (2) is now available to download.

This issue includes information on:

• The February 2022 ‘Making it Better’ event, as well as our upcoming ‘CRANE Preliminary Audit Report’ session 9 May 2022,

• our new CRANE Database Demonstration Videos, and

• CRANE at the 14th International Cleft Congress in July 2022!

The Newsletter has been emailed to all our known contacts at services that provide cleft care in England, Wales and Northern Ireland. If you would like to be added to our eNewsletter mailing list, please contact us.

The CRANE Newsletter Issue 2022 (1) is now available to download.

This issue includes information on:

• The latest CRANE Annual Report,

• our upcoming CRANE ‘Making it Better’ Learning event in February 2022,

• resources for Quality Improvement, and

• information about data collection milestones.

The Newsletter has been emailed to all our known contacts at services that provide cleft care in England, Wales and Northern Ireland. If you would like to be added to our eNewsletter mailing list, please contact us.

The Cleft Registry and Audit NEtwork (CRANE) Database has published its 2021 Annual Report.

This report presents results from the prospective audit of children born with cleft lip and/or cleft palate between 2000 and 2020, 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.

Download the October 2021 CRANE Newsletter here!

This issue includes information on:

• CRANE’s biannual checks – your teams’ contact details

• meet our new team member

• get weekly updates from CRANE – follow us on Twitter

• information about data collection milestones.

Keep us up-to-date with key contacts within your cleft service

We will be in touch twice a year to check that the contact information that we hold for members of your cleft service is correct.

This is to ensure that we are General Data Protection Regulation (GDPR) compliant and are not keeping old emails on record, or missing out new team members – especially those responsible for Information Governance (IG) within your team and Trust.​​​​​​​

We hold contact information for people who we have on record as stakeholders working within, and in collaboration with, cleft services

• Our stakeholders include CRANE Database users, CDG members, Clinical Excellence Network (CEN) leads, and people who have asked to receive our Newsletter. All flagged in our records appropriately. We use the contact details we hold for them for the sole purpose of conducting this national audit.
• We have no way of knowing about changes within cleft services – to ensure relevant members receive news about audit deadlines and publications – unless we check or are told directly by their team.

Tell us when staff have left your team and should no longer be allowed to access your team’s CRANE Database records

Once we are informed of this, we can cancel the staff members account, and ensure that we are GDPR compliant with regards to access to patient records.

Tell us about new staff joining your team who need access to the CRANE Database

We have been asked to clarify how this works. Here are the key steps:

• Please ask new staff joining your team to ‘Request an Account’ via our website.
• To ensure we are being GDPR complaint, we will contact the cleft team (where the request originated) to confirm the request has come from a legitimate member of your team.
  • This email will usually be directed to cleft team coordinators and data managers, and copy in the colleague responsible for Information Governance within your team / Trusts (e.g. Clinical Director / Medical Director).
  • Bearing this in mind, please do keep us up-to-date with key contact within your cleft team and trust.
• We are then able to amend our record accordingly, and set up the new staff member’s CRANE Database user account.

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

•   [email protected]
•   020 7869 6139

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:

•   [email protected]
•   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.