Information for Cleft Teams
 

Data Collection Milestones for 2019

For Summer/Autumn 2019 Audit Day Reports

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

The five-year outcomes to be presented in these reports are:

Decayed missing and filled teeth (dmft) scores (for 2004-2012)

Five Year Old Index scores (for 2004-2012)

Cleft Audit Protocol for Speech – Augmented scores (CAPS-A scores – for 2007-2012)

The data completeness figures to be presented in these reports will be for:

Decayed missing and filled teeth (DMFT) scores at 10 years of age (for 2007-2008)

Psychology (incl. TIM and SDQ) at 5 years (for 2011-2012)

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

For 2019 Annual Report

• 28 June 2019: Data collection cut off for 2019 Annual Report.
  

• October / November 2019: Review of report at Cleft Development Group meeting (specific date TBC).
  

• November / December 2019: Publication of 2019 Annual Report (specific date TBC).
  

Outcome data required for 2019 Annual Report by 28 June 2019

 

We will report outcomes for patients born in 2004 to 2013. 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	2013
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:
 

• CRANE Database - Data Dictionary
  
• CRANE Data Collection Forms - to aid CRANE data collection on patient registration (Form 1) and outcomes (Form 2)
• Speech Data Collection Form 2014