Data Collection Milestones for 2020

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 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  \  Birth years 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.