Guidance on registrations: Private patients and families not based in England, Wales and Northern Ireland

We would like to provide explicit guidance to cleft teams providing data to CRANE on whether or not the following children should be included/excluded from being registered on the CRANE Database:

1.    Private care patients
2.    Children of families not based in England, Wales and Northern Ireland

1. CRANE guidance on private care patients

One of the key functions of the CRANE Database is to serve as a registry for all babies born with a cleft, within NHS hospitals and private practices. Both should be registered in CRANE.

Specifically, the following children should be registered in the CRANE Database:

  • Babies born in UK private practices, and receiving cleft care services either from NHS services or from private cleft care providers.
  • Babies born in NHS hospitals and remaining under the care of NHS services. This includes children who also receive some private cleft care treatment, in addition to the NHS care treatment.

Registration of babies born in both NHS and private practices in England, Wales and Northern Ireland, improves our estimation of incidence of cleft and our ability to monitor the epidemiology of oro-nasal clefting in these countries.

Where these children – registered in CRANE – go on to receive care services from one of the 15 NHS centralised cleft teams (as listed in CRANE Database Annual Reports), at any stage of their care journey, this outcome data should also be recorded in the CRANE Database – with the appropriate consent.

2. CRANE guidance on families not based in England, Wales and Northern Ireland

Patients who are not resident in England, Wales and Northern Ireland, should not be registered in the CRANE Database.

Specifically, the following children should not be registered in the CRANE Database, nor have outcome data collected in CRANE:

  • Babies from parents not based in the UK, born with a cleft in a UK hospital who then returned to their home country. This is because CRANE is a registry for babies from families residing in England, Wales and Northern Ireland.
  • Babies born outside of the UK with a cleft and who travel to the UK to receive cleft care services, from either the NHS or private cleft care providers, then return to their home country after their cleft care. Recording of this information would distort the estimation of incidence of cleft and evaluation of cleft care services in England, Wales and Northern Ireland.

Note: Where we have made reference to the United Kingdom (UK), in the text above for simplicity, we are referring to England, Wales and Northern Ireland. As these are the countries currently submitting data to the CRANE Database.

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