Database Tips: Managing records of children with additional diagnoses

Managing CRANE records of children with additional diagnoses

If a child has Pierre Robin Sequence (PRS):

• Select ‘yes’ under ‘Pierre Robin Sequence present’ field in the database on the ‘Cleft Details’ tab of the database.
• If no other syndromes are present, please select the ‘no’ option under ‘Confirmed syndromic diagnosis present’ on the ‘Syndromes’ tab.

This allows us to analyse outcomes in children with PRS without additional syndromes. This is particularly important for analysing Speech outcomes.

If a child has micrognathia/micrognathism and no syndromic diagnosis, please select the ‘no’ option under ‘Confirmed syndromic diagnosis present’ on the ‘Syndromes’ tab.

If a child has developmental delay, which is not part of a confirmed syndrome, please select the ‘no’ option under ‘Confirmed syndromic diagnosis present’ on the ‘Syndromes’ tab of the database. If an audit assessment is not possible because of delayed development or the child is non-verbal, please select the 4th option – Clinically contraindicated – on the drop down menu under ‘reason outcome not collected’.

If a child has a diagnosed syndrome, either named or with an unknown name, please ensure this information is entered under the ‘Syndromes’ tab of the database.

Where possible, please assess Speech and record this in the CRANE Database for children with syndromes such as:

• Di George syndrome,
• Stickler syndrome and
• Van der Woude syndrome.

By submitting this data, the CRANE Database will – in time – collect data on enough children with these syndromes to report on their Speech outcomes at 5 years.

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

•   crane@rcseng.ac.uk
•   020 7869 6139