The WHO Human Genetics Programme contracted the International Centre for Birth Defects (ICBD), Rome, Italy, to establish a database on craniofacial anomalies in order to achieve one of the three main objectives of the International Collaborative Research on project on craniofacial anomalies started in 2000. It was recognised that gaps in present database collections could limit the understanding of the causes of craniofacial anomalies as well as the possibilities to implement useful actions to improve the quality of life of persons with craniofacial anomaly.
The International Database on Craniofacial Anomalies (IDCFA) is a centralized, comprehensive source of information on individual cases of craniofacial anomalies gathered regularly from a global network of partnering birth defect registries and clinical databases developed to meet the global needs for data identified today.
The Human Genetics Programme is confident that collection and dissemination of data on persons affected by a craniofacial defects could improve their health and help researchers find to innovative solutions to prevent undue suffering.
The main aims of the International Database on Craniofacial Anomalies (IDCFA) are:
- to stimulate existing databases to share their data creating a specific worldwide database : International Database on Craniofacial Anomalies (IDCFA).
- to encourage the establishment of new database to contribute to the worldwide IDCFA.
- to present the collected data in a suitable way or to make available more specific data to stimulate research research addressing primary and tertiary prevention as well as better treatment of craniofacial anomalies.
- to stimulate scientific and lay organizations to collect and share relevant data and information on persons affected by a craniofacial anomaly.
Design and collection of the database
The development of the IDFCA is taking place in two phases:
Phase 1: The database will collect simple information on new born children with cleft lip and/or palate named collectively as Typical Orofacial Clefts (TOC), from existing ongoing and well designed registries of birth defects.
Phase 2: Following this basic collection, IDCFA will expand to include:
- simple data on TOC from less developed or new birth defects registries.
- more complex information from birth defects registries on risk factors associated to TOC.
- data on less frequent craniofacial anomalies and syndromes.
- information on clinical pattern, quality of life and quality of services from registries as well as from medical departments and support organizations.
Use of the database
Although this database is still in its early days of development, a clear criteria for accessing the information will be available to the user shortly. Nonetheless, the following uses of the data are anticipated.
Use of aggregate data
- Any health care provider involved with the care of persons with a craniofacial anomaly.
- Any researcher working to improve care for persons with a craniofacial anomaly or the prevention of these anomalies.
- Parents and relatives of persons with a craniofacial anomaly who want data on the various aspects of :etiology, clinical pattern, quality of life, quality of services.
Case by case data
- Any researchers belonging to a collaborating data source whose study protocol has been approved by the Advisory (Steering) Committee.