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The Cleft Registry and Audit NEtwork

Information for Cleft Teams
 

Data Collection Milestones for 2020 - Revised in light of Covid-19 pandemic

We hope everyone is well and staying safe in these challenging times.

We are aware that in all regions of the UK cleft-related surgeries and outpatient clinics have been suspended due to Covid-19.  With this in mind, and following consultation with the Chair of the Cleft Development Group, we have revised the plan for audit reporting in 2020 as follows:

  • The 8 May 2020 Data collection cut off for 2020 Summer Audit Day Report has been suspended.
    • No audit day reports will be generated in 2020, but are planned to resume in 2021.
  • Piloting of the CRANE outlier management process will be postponed until the spring of 2021.
    • It is now planned to pilot the process in the summer of 2021 for the following 5-year outcomes: Facial growth, dental health, speech and psychology.
  • CRANE will continue to produce an annual report in November 2020.
    • The report for 2020 will follow the following structure:
      1. Epidemiological data reporting.
      2. Standardised Specialty Outcome Data Reporting will be for England, Wales and Northern Ireland, and not at individual cleft team level.
      3. CRANE Project development /CRANE research reporting.
    • Previously shared date for data collection cut off of 26 June 2020 will be maintained for all outcome reporting.
    • CRANE resources allowing, further investigation of risk stratification of data will progress.

If local services have any capacity for CRANE-related work, we would ask that patient registration be prioritised.

At this difficult time, we thank you all for what are currently doing for the country.


Timeline and outcome data required for 2020 Annual Report by 26 June 2020 

  • 26 June 2020: Data collection cut off for 2020 Annual Report.

  • October / November 2020: Review of report at Cleft Development Group meeting (specific date TBC).

  • November / December 2020: Publication of 2020 Annual Report (specific date TBC).

We will report outcomes for patients born in 2004 to 2014. For patients whose outcome data are available and have not previously been submitted, please submit the following information required for each birth year.

 

Outcome  \  Birth years

2004

2005

2006

2007

2008

2009

2010

2011

 2012

2013

2014

Weight at 5 years












Height at 5 years












Decayed, missing or filled teeth in primary dentition (dmft) at 5 years












Decayed, missing or filled teeth in primary dentition (DMFT) at 10 years












5-year old index score (‘complete UCLP’ cases only)











Speech (CP/UCLP/BCLP cases only) at 5 years




 

 







Psychology (incl. TIM and SDQ) at 5 years












Outcomes are not required where patients have declined consent.

The Outcomes Record data download allows you to review the data that has been submitted to date by birth year and outcome type - please contact us if you require help using the download.

 

Information Leaflet and Parental Consent Forms

The following documents have been prepared to help you gain documented consent from parents or carers who are speakers of English, Welsh, Polish and Urdu.

CRANE Database Information Leaflet - August 2018 - English

CRANE Database Data Linkage Leaflet - August 2018 - English

CRANE Database Parental Consent Form - August 2018 - English
 

The Welsh, Polish and Urdu translations below are of our previous information leaflets and consent documents - updated versions of the 2018 documents will be made available when completed:

CRANE Database Information Leaflet - April 2013 - Welsh
CRANE Database Parental Consent Form - October 2010 - Welsh

CRANE Database Information Leaflet - April 2013 - Polish

CRANE Database Parental Consent Form - October 2010 - Polish

CRANE Database Information Leaflet - April 2013 - Urdu
CRANE Database Parental Consent Form - October 2010 - Urdu
 
CRANE Data Dictionary - detailing CRANE data collected 

The following documents detail the data collected by the CRANE Database:

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