National Cleft Database
Dublin Cleft Centre
2002
The purpose is to provide information on children or adults who present with cleft lip and/or palate.
National — participation is voluntary.
The National Cleft Database enables the stakeholders to monitor the frequency and incidence of clefting in Ireland. It facilitates audit, research and reporting on the quality of cleft care. It supports planning and development of appropriate services and enables coordination of these services. The cleft database incorporates the minimum records required to comply with the audit requirements as stipulated by Eurocran for Cleft Lip and Palate for children. Statistical information on an annual basis can be used for benchmarking purposes within the Craniofacial Society of Great Britain and Ireland.
Initial registry i.e. demographic data; referral source; cleft classification and medical history; feeding history; antenatal diagnosis; primary surgical care pathway.
Follow-up registry i.e. surgical care pathway.
Audit records i.e. hearing; speech; dental; palatal; integrity/growth records photographs); objective assessment of velopharyngeal function; instrumental assessment of resonance; cleft coordinator contact; clinic details; cleft Clinical Nurse Specialist (CNS) contact; genetics patient status.
Multidisciplinary team in cleft care — (Plastic Surgery, Speech and Language Therapy, Orthodontics, Dental, Maxilla Facial, Prostodontics, Ear Nose and Throat (ENT), Audiology, Cleft Nurse Specialist, Clinical Photography, Cleft, Coordinator/Manager).
The data is compiled from several sources i.e. the cleft database registration pro forma, healthcare records, hospital patient registrations system (IPMS) and audit records from each discipline of the multidisciplinary cleft care team.
Not available
Not applicable
Data submitted annually to Craniofacial Society of Great Britain and Ireland (CFSGBI), and to the Health Service Executive Congenital Anomalies Registry (EUROCAT).
Data requests received by team members at the DCC are forwarded to the Cleft coordinator/Manager. Annual audit of annual returns to Craniofacial Society of Great Britain and Ireland (CFSGBI).
Annual report generated for Congenital Anomalies Registry.
Dataset design is produced by the multidisciplinary team in cleft care under the auspices of DCC. Ongoing work in progress for completion of data dictionary.
This template has not been updated since Version 2.0 of the Catalogue in 2014