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What is the NZCAR?
The NZCAR (formerly the New Zealand Birth Defects Registry) was established in 1977 to routinely collect data on all births with a diagnosed birth defect born or treated in a public hospital in New Zealand. The NZCAR became a full member programme of the International Clearinghouse for Birth Defects Surveillance Research, based in Rome, in 1977.
What is the NZCAR used for?
The NZCAR, which is funded under a contract with the Ministry of Health, has six main purposes:
To provide reliable and valid data on the prevalence of birth defects in New Zealand;
To monitor the prevalence of birth defects (e.g. over time, across areas, and between demographic groups);
To investigate clusters of birth defects;
To use the data to assess the effectiveness of birth defects prevention programmes (e.g. screening);
To provide advice to health care professionals about birth defects;
To provide data and analysis for the planning of health services and the development of health policy related to birth defects.
The NZCAR is an integral component of RCHH’s programme for monitoring the environmental health of New Zealand.
Each year, the NZCAR receives a number of ad hoc requests for data from a wide variety of people and institutions.
Is the data in the NZCAR confidential?
The data and all reporting from the NZCAR do not include identifying information. Data in the NZCAR is treated with the strictest confidence. Using these data for specific research studies first requires the consent of an ethics committee.
How does my information end up in the NZCAR?
The NZCAR has a continuous process of ascertaining cases of livebirths with birth defects among newborns and those requiring treatment in a public hospital. The data is extracted from the national public hospital database (hospital events) called the National Minimum Dataset (NMDS), maintained by the Ministry of Health.
The NMDS is a national collection of public and private hospital discharge information, including clinical information, for inpatients and day patients. Further information about the NMDS is available from the Ministry of Health website.
Do you not require my permission to be included in the monitoring programme?
The data are routinely collected by the Ministry of Health, and permission is not required to use these for monitoring purposes.
Who is responsible for the NZCAR?
The Research Centre for Hauora and Health, Massey University, is funded through contract with the Ministry of Health to operate the NZCAR. Associate Professor Barry Borman is the Director of the NZCAR. His contact details are: Email: firstname.lastname@example.org; Tel: (04) 801-4985
Other data sources from which data is extracted?
The NZCAR also extracts non-identifiable data on the occurrence of birth defects from national infant mortality and mortality data systems (which includes death certificates and post-mortems). Non-identifiable data on birth defects reported in pregnancy terminations are also included in the NZCAR.