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The Cleft Registry and Audit NEtwork

Information for Cleft Teams
 

Data Collection Milestones for 2018


For 2018 Annual Report

  • Friday 29 June 2018: Data Collection cut off for 2018 Annual Report analyses

  • October 2018: Review of report at Cleft Development Group Meeting

  • December 2018: Publication of 2018 Annual Report


For Summer/Autumn 2019 Audit Day Reports

  • 3 May 2019: Data collection cut off for 2019 Audit Day summary reports.

  • June 2019: Reports start being presented at Quad-Centre and Tri-Centre Audit Days (specific dates TBC).


Outcome data required for 2018 Annual Report by 29 June 2018

 

We will report outcomes for patients born in 2004 to 2012. For patients whose outcome data are available and have not previously been submitted, please submit the following information required for each birth year.

 


Outcome

2004

2005

2006

2007

2008

2009

2010

2011

 2012   

Weight

Height

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


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


Speech (CP/UCLP/BCLP cases only)




 

 



Psychology (incl. TIM and SDQ)










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 - May 2016 - English - Under further development. Update to be published August 2018

CRANE Database Data Linkage Leaflet - May 2016 - English - Under further development. Update to be published August 2018

CRANE Database Parental Consent Form - May 2017 - English - Under further development. Update to be published August 2018
 

Versions of the English language information leaflets are also available for printing in A5 (below), and can be printed in grayscale or black & white (by amending your printer settings) if prefer not to print colour.

CRANE Database Information Leaflet - May 2016 - English - A5 Version
CRANE Database Data Linkage Leaflet - May 2016 - English - A5 Version

The Welsh, Polish and Urdu translations below are of our previous information leaflets and consent documents - updated versions of the 2016 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:
 

CRANE Database Parental Consent Form_October 2010_Welsh
PDF
CRANE Database Parental Consent Form_October 2010_Polish
PDF
CRANE Database Parental Consent Form_October 2010_Urdu
PDF
Speech Data Collection Form 2014
PDF
CRANE Database Information Leaflet_May 2016_English_A5
PDF
CRANE Database Data Linkage Leaflet_May 2016_English_A5
PDF
CRANE Database Parental Consent Form_May 2017_English v1
PDF
CRANE Database Patient Information Leaflet_April 2013_Welsh
PDF
CRANE Database Information Leaflet_April 2013_Polish
PDF
CRANE Database Information Leaflet_April 2013_Urdu
PDF
CRANE Database Information Leaflet_May 2016_English v1-1
PDF
CRANE Database Data Linkage Leaflet_May 2016_English v1-1
PDF
CRANE Database Parental Consent Form_May 2017_English v1-1
PDF
CRANE Data Collection Form1_March 2018
PDF
CRANE Data Collection Form2_March 2018
PDF
CRANE Database - Data Dictionary - April 2018
PDF