Cleft Database
Dublin Cleft Centre.
2002
The purpose is to gather centralised information on children or adults who present with cleft lip and/or palate which aids delivery of follow-up care, audit and research.
National — participation is voluntary.
Cleft is a lifelong condition and data collection starts from antenatal referral and is maintained throughout life with patient consent.
The National Cleft Database enables the stakeholders to monitor the frequency and incidence of cleft in Ireland. It facilitates audit, research and reporting on the quality of cleft care.
It supports planning, development and coordination of multidisciplinary services across hospitals and community 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.
The Multidisciplinary Cleft Team
- Cleft Service Coordinators
- Plastic Surgeons
- Maxillofacial Surgeons
- Cleft Nurse Specialists
- Speech & Language Therapists
- Audiologists
- Clinical Photographers
- Paediatric Dentistry
- Orthodontists
- Prosthodontists.
These data users with the development and support of the cleft data collection and reporting software, training of coders, data quality, audit and reporting respond to requests for data in line with current GDPR, Hospital Ethical & Research Regulations.
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 fistula records, growth records photographs); objective assessment of velopharyngeal function; Cleft Q quality of life measure, sleep study data for babies with Robin Sequence, instrumental assessment of resonance; cleft coordinator contact; clinic details; cleft Clinical Nurse Specialist (CNS) contact; genetics patient status.
This is being developed at present.
PPSN is included in the dataset.
The following data is not collected at present:
- Address
- Gender
- Religion, if any
- Ethnicity.
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 such as patients completed Cleft Q questionnaires and records from each discipline of the multidisciplinary cleft care team.
“RPL” Code for Cleft Classification.
- 80 to 100 New-born Registrations
- Standardized Audit Records at age 5,10,15,18 years and final outcome:
- Plastics
- Nursing
- Speech & Language
- Audiology
- Dental
- Orthodontic
- Prosthodontic
- Maxillofacial
- Clinical Photography
- Patient Recorded Outcome measure from age 10 years.
Data submitted annually to Craniofacial Society of Great Britain and Ireland (CFSGBI), and to the Health Service Executive Congenital Anomalies Registry (EUROCAT).
Data will be submitted to the European Reference Network (ERN) from 2023.
Data requests received by team members at the DCC are forwarded to the Cleft Data Manager. Annual audit of annual returns to Craniofacial Society of Great Britain and Ireland (CFSGBI).
Annual report generated for Congenital Anomalies Registry.
No.
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 updated 31/05/2022.