Reproduced from a leaflet prepared by the Dublin Cleft Centre]
What is a cleft database?
The cleft database is a set of information on children or adults who present with cleft lip and/or palate. This information is stored on computer.
Why is a database needed?
- To promote agreed standards in service provision.
- To audit and report on quality of care.
- To monitor the frequency and incidence of clefting.
- To support research.
- To plan and develop appropriate services and to co-ordinate these services.
How will a database work?
A database registration form will be completed, for each individual, by the Plastic Surgeon, in conjunction with the parents/guardian and Cleft Co-ordinator. This information is centralised onto a database, which is located in St. James’s Hospital and is known as the Cleft database.
What information will be held on the Cleft database?
The database holds demographic information such as patient demographic information such as patient name and address, next of kin, details on the type of clefting and other clinical information, such as family history of clefting, associated syndromes etc., dates and details of clinical procedures, assessment and audit and outcome.
Who will see the records on the database?
The database records will be available to the individual or in the case of a child, his or her parents/guardian, and to the cleft team.
Under the terms of the Data Protection Act, 1988, an individual, or in the case of a child his or her parent, has the right to request a copy of the information held on the database, and has a right to have any inaccurate information rectified or erased.
The Freedom of Information Act, 1977, also gives individuals similar rights in relation to their personal information. The database is managed by the cleft co-ordinator, who is a clinician, with a special interest in cleft care.
Who will have access to statistical information from database records?
Statistical information refers to anonymous information from the database, and contains no identifying information such as name, address or next of kin. Statistical information may be made available to:
- The Department of Health and Children
- The Health Research Board
- Others with a legitimate research interest
How will the information be used?
- To monitor service provision
- To assess future service requirements
- Statistical analysis
- Annual Reports
For how long will the records be kept on the database?
The information is retained on the database while the individual is in receipt of, or in need of services.
Will the database be secure and confidential?
The database will maintain a Consent, Confidentiality and Security policy, in line with appropriate guidelines specified by the three hospitals involved, and in keeping with the Freedom of Information and Data Protection Acts. Patient anonymity will be maintained when conducting research and audit.
How do I give consent?
Each individual, or in the case of a child, the parent/guardian, will be asked to give written consent prior to data entry onto the database.
Is participation voluntary?
Yes consent is voluntary, but we hope that everyone will participate.
How do I get more information on the cleft database?
If you would like more information on any aspect of the cleft database, you can contact one of the Cleft Co-ordinators below;
Monday to Friday 9.00am – 5.00pm.
Our Lady’s Hospital for Sick Children Crumlin / St. James’s Hospital
Tel: 01 4162832
Anne Mc Gillivary
Cleft and Craniofacial Co-ordinator
The Children’s University Hospital
Tel: 01 8784200 / 01 8784293